November 7, 2003 to January 6, 2004

 

 

11-7-03

WELL TODAY WE HAD ANOTHER BIGGG COINKYDINK!  We wanted to stop at the local candy store and give the owner a flyer to post on the luncheon.  I was watching our bikes 3 stores down, while Alan ran into C.V.S.  And my back was to her store but when I turned around I saw her go in.

 

Alan came out and we went to her door and it was locked.  We figured maybe she went to the bathroom? Waited some more...left.  This was in Margate.

 

Now we biked to the liquor store to get lotto tickets [60 mill]. And then we continued back to Longport to our post office box [to pick up yet more checks for tickets].

 

O.K. ---so who was coming out of the post office as we were going in?  It was the candy store owner. I freaked out.  Gave her the poster and Foundation information, and told her the tale. 

 

NOW FOR THE CHRISTINA PERILLO STORY. Last night we went to Gilda's Club and it was totally fun. Christina Perrillo was the speaker and so funny...her stories had us all laughing.  She does S. Philly accents, like Rocky, and was so upbeat as she prepared all the parts of the meal she was treating us to. Her husband helps - the sous chef!  We will have to catch her Channel 12 show [She is on PBS - a show called 'Christina Cooks'] . She got an Emmy for it.  She made us [and 40 of our closest friends] dinner.  It was a shock that I tasted it. I don't try vegan food easily. 

 

  First they passed around to everyone, a mug of this bean soup [agh - actually the taste wasn't too terrible but it was so hot it burnt my throat - spicy hot and not good for a post radiation esophagus].  Then there was a salad with pecans and pear cubes [too much lemon in the dressing]. And Belgian endive [which she said is very expensive].  Then pasta. And she made macaroons with coconut  [double agh] BUT DIPPED IN CHOCOLATE.  So I sucked it off. 

 

 Tomorrow we will run to Bonterra's [OUR LOCAL HEALTH FOOD MARKET] and probably meet all these other people there.

 

BUT the big news is I went up to her and told her about my rarity and she volunteered an auction item. She will go to the high bidder's house and make dinner for 4 plus bring a musician, Jon Michael,  from Nashville to play guitar music. Whoa...we were knocked off our feet and so was the executive director there at Gilda's.     Christina had leukemia 20 years ago, refused chemo and changed her diet and is doing well. Go figure. I love stories like this.

 

We are speaking next week at the Jack Fox's [from the Jewish Community Center  in Margate]  AVODA group  about how to get started on researching your family history.  I think I told you we published my families back in the 80's.  It actually needs an update so when the luncheon is over, that could be a new project.

 

11-8-03

You can ask me anything - never feel funny.  I have always been very open about everything.  If I had thought about getting cancer years ago, I'd feel weird.  But when it was a reality, the only feeling I had, was I wanted to get rid of the invaders.  My friends gave me all kinds of imagery to use...like they deserve to die after what those cells did to me, etc.

 

When I think of the cancer being in my body it is surreal.  I always expected to have a heart attack because of my father's when he was 45 so this was a shock. My mother died of cancer, lymphoma and I had wished never to suffer like she did.  Hers consumed her in 8 months.  She was 49.  She was burnt to death from the radiation treatments in 1972, which looking back, were barbaric then. Maybe I am even in denial.  I often don't think about it and go on to other thoughts.  But it is always somehow there in the back of my mind; and I am always praying it is gone and not really growing.  If the cells would just lay dormant and not grow, that would be a blessing. 

 

 If I spend too much time thinking about it, I might crack up so it is a protective mechanism to throw myself into other activities when I am able.  Others I know with various types of cancer do the same thing. What I hope is the imagery and meditation can stem its growth.  I have always been strong and gotten what I wanted and am trying to control my mind to control the cancer.  I have to think it will work, or I'd have given up a while ago.

 

A few times Alan and I both nearly lost it when 2 certain drs. were very negative with us.  That is when they needed to put me on Valium. Not with the initial news and not with the first 9 hour operation. Not with the radiation. But when the recurrence happened last March. We were in the depths because an awful dr. said it was all over my body and nothing could be done.  Well we went down a deep dark abyss until other drs. helped put it in perspective. And I live to prove that dr. wrong. That is another reason why we work so hard to raise funds to find a treatment.

 

11-9-03

The weekend was exhausting for me [I haven't moved much since we came home this afternoon] but we had a wonderful time.  Lucille is from Ardmore and we have known each other for 20 years. She is amazing - her mother had surgery on Friday, Lucille had a venous infusion for her bone cancer the same day, she skipped a party in her honor that day at Jeanes Hospital [she was promoted to the executive staff], and made me a birthday chocolate peanut butter pie instead.

 

Last night we had dinner at the Yacht Club in Somers Point, a rare outing for us. We have passed this lovely building hundreds of times but never went to dinner there; it just wasn't a priority - we aren't the types to go and try restaurant after restaurant.  It has to be an occasion. The Yacht Club is a restored Victorian building, a la Cape May style.  You can see yachts and little flickering lights from the homes across the bay. The best part was we had a picture window and were watching the eclipse. The food, room and view are outstanding but it is open to a bar where smoke drifts in. To me that is intolerable to my trachea so we won't be going back.

 

The glass store was such an experience, our semi-annual excursion. There are many glass factories there among them Durand and Cristal d'arques plus they sell Mikassa. We all met at a WA-WA in Somers Point. We had a 4-car caravan to a Millville outlet [shh - secret] where we go every fall to purchase Mikassa, etc.   Our best buy was bookends by the French Company, Cristal D'arques

 

When we arrived it was the longest line ever to even turn off into the street where the outlet is. I have a really gutsy new friend who encouraged me and another to just get out of the cars and 'bust da line.'  If it weren't for Diana, Rhoda and I would have left with our anxious husbands, who were toe-tapping.  We had seen the saga before and would never have fathomed getting in.  It was like a story out of the bible...we all walked in [AND THEN OUT ---WITH CARTS, YET] and the gate keepers eyes were temporarily blinded to us.  You have mystical powers.

 

My thymic friend, Larry, in Texas said from now on I can always use the cancer prerogative.   But the ladies and I decided to say we were in the cars so long, we needed to go in to the bathrooms.  But we didn't need any excuse.  I taught them a tae kwon do face and we just strolled in the gate and blended in really quick.  Coming out was another story. It was tiresome fun. We have been laughing for days.

 

The women-folk got out of the cars, we went in and shopped, and do you believe that by the time it came to leave, the men hadn't even moved up enough to make it into the parking lot to park the cars. The funny part about this is that "No walk-ins are allowed." You can't do what we did - they stop you from walking in; you HAVE to drive in.  Very Gestapo-ish and discriminatory but we understand why.  Someday there will be a riot there.   But the ladies and I decided to say we were in the cars so long, we needed to go in to the bathrooms.  But we didn't need any excuse.  I taught them a tae kwon do face and we just strolled in the gate and blended in really quick.  Coming out was another story. It was tiresome fun.

 

Get the Eventail bookends by Cristal D'arques.  They were 3 dollars and Alan just looked them up on the internet and they sell for...get this...ta daaa...drum roll, please... $58.00.

 

The Pfalzergraf plate I got for $2.00, sells for $30.00.  At least… a lovely blue rimmed 13 inch job.  Well the 12 inch one sells for $30.00 So it goes.  We got a few other items but it was not the same bargains or caliber as other years.

 

One of the men said we should buy the stuff and sell it on EBay.  Who has time?   Diana’s husband WENT BACK in after we packed up our cars.  He said he had waited that long in the line that he wanted to see what it all was about.  She said that if we do this next year we must put together a major game plan    This will require months of strategic maps and time tables. We laughed and laughed over the "Marshall Plan" we now have to make for the next time. 

 

I got this idea to make gift baskets for the actors coming from N.Y. since they are forgoing their honorariums. There  is a great cut glass outlet near here that holds a sale twice a year. We figured we'd start the basket off with a nice piece of French crystal.

 

I guess these gift baskets for our actors ARE verging on academy award stature!  Getting all those bargains were exhausting.  I haven't moved much since we came home.  It was fun to have a near normal weekend again, but tiring.

 

11-10-03

Today I felt much better after sleeping about 14 hours.  Really have no tolerance for this type of fatigue.  I have so many lists. Yesterday once I got back into the car, I had a hard time keeping my eyes open. How do you do it?

 

11-12-03

Remember how strong these treatments are.  They make us feel miserable for so long.  I have a friend that had chemo and rad. for Hodgkin's and finished in March and is always complaining how lousy she feels and I tell her it just stays in the system killing the demons.

 

Just can not believe you fell and hurt yourself; how much can one person take.  Hope you are feeling better soon.

 

Yes, my voice goes in and out and it is hard to talk sometimes.  The phone is tough for long calls; and being in company where I have to 'tell my stories' is hard.  I am used to 'entertaining the masses' so this is difficult.

 

I loved the little story on germs.  The problem is I had one microbiology course too many.  Most people wouldn't even have noticed this. 

 

It is still mild here;  yesterday we were washing summer furniture outside
with the hose in sandals ---while I made a pot of vegetable soup.  Today it
was mild again - it is funny that the Pear trees have flowers on them again.

 

11-13-03

You do have the funniest way with words and it always brings a laugh. And it goes back to what we have been saying to each other for our very long relationship and friendship, here.  We have to keep positive and upbeat; those are the people that beat this thing [the dr. actually just told us this today - the radiation oncologist].

 

11-14-03

Alan is the most incredible being on the earth. He has been ...there aren't any words. I know I am here because of him. But his knee has been painful, though. The orthopedist said Alan's knee cartilage has a tear and there is fluid in there. He says it is up to him to decide what he wants to do.  Alan is choosing to wait; the pain, he says, is not too bad that he'd have an operation.

 

As for me, the trigeminal medication is FINALLY working and I had my first real meal last week.  Today was the radiation oncologist for a check-up ...he never knows what to say to us. No dr. does.  Just get lots of scans to catch anything early before it gets big. He looked at the films and felt that the clavicle spots looked like small nodes but wants to watch them.   He will be at the luncheon. By Friday I was tired. But we did go out and do some shopping - like order a new sofa that we had been looking for  4 years now.  I couldn't get motivated before.  We throw ourselves into the Foundation so we don't have to think of it but we still do.

 

The fans  are so excited about April 18th.  Those that call to purchase the tickets say things such as "I am jumping out of  my skin."  It feels good to make so many people this happy.  We will be sold out by Thanksgiving...not Christmas, like we first thought. After that we will have a waiting list in case someone cancels.

 

We are making up the job grid now for the volunteers - we need a ton of help that day... especially as we sell more tickets.

 

11-15-03

No special plans for my day...just very thrilled to be here. We take it moment by moment and to wake up each day and see Alan's face is enough for me. Our whole perspective on life has changed. I feel like each day [sometimes each minute] is my birthday now and we try to live it that way. Trying to find something special to do each day is our goal but most of the time it is to be at home among the things we like. 

 

 It sounds so simplistic but it took a half century to realize this.  We do have plans with friends for breakfast at a little clam bar on the bay - they have the best pancakes and waffles [and I will add chocolate chips and walnuts to my order] and that is really high living, to me. The clam bar part is closed for the winter but it is a local secret that in the back, they keep that open each day of the winter for breakfast.

 

We went to Cousin's for lunch .  Most of the AVODA luncheon is spent with socializing among the members at the beginning, then lunch.  It is a nice group of people and the group is dedicated to service - providing scholarships for needy students in the area.  Most of the members are retired and have the time to devote to the cause.  It is a nice group of much older people [like 25 sets of grandparents] and the group is dedicated to service - providing scholarships for needy students in the area.

 

Well, Rhoda and Steve wanted more objets d'art from the Arc sale so off they went today.  I just couldn't get up that early. So they called and said it was a mistake; they never got in. By the time they got there at 9:30, the traffic was backed up down the main road  AT LEAST 100 CARS MORE THAN WHEN WE WERE THERE last week.  They turned around. We have no idea what happened to our nice little secret. Boo Hiss.

 

What ho!  The carriage with the steeds pulled up.  It actually was FedEx Today we received a package from Hershey's [Gail sent it to me]...it is a tin with a solid chocolate birthday cake, candle and all - a tin of chocolate chip cookies - a box full of mini bars and kisses.  I AM at the ball now.

 

11-16-03

Today is my birthday.  Here is a piece of my cake [I am learning to use my wise friend Larry's cancer prerogative, C.P.,  and doing whatever I want.

 

11-17-03

Then last night, Marcie and Art had birthday cake for me so that was nice. And today I am exhausted.  Yet tomorrow night we are meeting 6 others at the Bogotá, the new casino by the bay, for dinner. A week of living it up.

 

And I forgot to thank you for the prayer page.  It seemed to be written especially for us.  Lately each day brings so many coincidences but as Deepak Chopra says, which is similar to your Daily Word, there aren't coincidences but a connectedness in all the instances.

 

11-20-03

Thanks for the kind words that I have a talent; now we need luck. 

 

Today is our 37th anniversary.  Just happy to be here. Well it was 37 years ago that I married the Prince. I am just glad to be able to swallow again - so last night we met a few couples at the Bogotá to try their buffet...a new casino in Atlantic City.  God bless America - you should see all the food and varieties [I skimp on dinner and go straight to dessert].

 

 Today a few more fabulous auction items arrived - a local rich man opened an ENTIRE new block of stores on the boardwalk.  We walked thru some and I picked up business cards and called.  They said to send a fax about our event and they donated these very expensive bags.  One is a cigar box lined in black velvet with a plush tassel; supposedly Laura Bush and Sara Jessica Parker carry them. Also was a sports tote decorated in a golf motif.  The first is estimated at $150.00 and the second is $50.00.  Then  someone in Michigan bought 5 tickets.

 

Yesterday the script arrived from Dharma & Greg; and we got this expensive set of make-up from a N.Y. city company called Tony & Tina.  We are going to need a van to get this all up to the casino.

 

11-21-03

The internist we use is Dr. L. Anastasi.  He saved my life by being such a great diagnostician.  He's very thorough. And so is his partner Dr. J. Gaffney.  We feel lucky to have found them. He calls to check up on me, he calls back even during weekends, and he supports me in my crazy ideas [when I ran for school board, he came out to vote for me].  There are some good drs. here - just have to do some weeding.

 

To answer your question, Dr. Check is an endocrinologist also and he has a research lab and has written dozens of articles on his cancer research.  He is in  with Sloan Kettering and IMclone and has had meetings on our behalf. He has contacts that are unbelievable and he will play the intermediary for now.  We are so grateful beyond words that he can do this for us.

 

The 2nd question was on the Dr. in Indiana.  For a year and a half now, all roads lead to him.  Every other dr. [from Penn to Harvard to UCLA, etc.] has said he is the expert and has seen the lion's share of the cases [maybe 10 or so] ------it is not like breast cancer where there are millions of cases. Anyway, we have spoken to about 7 of the people that went to him and they are all still alive [two of them have survived 14 years but I have something different than they had].  Right now I don't have to see him; he and Alan email and are on first name basis and Dr. Loehrer agrees 100% with what my drs. are doing here. He is on our board - did you see our website.

 

As most people who were around then say, "I remember where I was when I heard," so do I.

 

J.F.K. - I still lived on Friendship St. in Mayfair, just started going to Temple University  and was preparing to go out on a date with Uncle.  We were only dating 4 months then.  Your Grandpop Marty was in their bedroom watching TV because he was getting ready to go somewhere too.  When I passed their room and peeked in at the  television [remember it was an old 1963 model], the news had just come across.

 

11-22-03

 

I have people that I told you all along that call and whine [literally about a blister on the foot - this one broad ONLY wants something to be wrong with her].  I guess she feels left out - I will gladly trade anytime.  She has no idea what real problems are in life and how she is wasting precious seconds on crap.

 

Alan's knee is stable as long as he doesn't twist it sideways.  I worry so much when he is out on the cycle. Alan really loves getting out for a while on the bike - he said it clears his mind. But we know someone that was killed last week on his when a car hit him. Now I sit here and my heart pounds until he gets home.

 

Shocker.  Guess what!  Adam took 'a vacation."  Well, for him it is
one...though he DID NOT take any days off from work - yet. But it is a
start.  He came to the shore last night and tonight.  His friend Rob wanted
to stay in A.C. - go to a club or two, gamble, eat.  I am just glad he is
out of his apartment for a while and in a great environment.

We had NO idea until he called at 3:30 this afternoon. Funny how things work
out - we had plans but the woman got a flu shot the other day and was having
a reaction so they were canceled.  The weather is wonderful...  We just came
back from a walk on the boardwalk WITHOUT  coats - it has been so mild out.
We met him at Planet Hollywood [his favorite place] for dinner.

We can't really figure out what went wrong with Nancy but he did say he
likes when a friend from Jenkintown, Bonnie, drops by.  What is it with
these common names of influential women in his life. Anyway, they are just
friends.

 

As long as I am not eating or talking I can do a lot of things.  This afternoon I was gardening a little - we still have lilies blooming.   Yesterday I went for a ride on Alan's motorcycle [I love going over bridges and seeing and smelling the water]. 

 

How's the traveling going?  "Are you there yet?"  Just a joke...as kids every 5 minutes we'd ask our father that [as we drove along on the various journeys each summer].    The next question - "How about now."

 

11-23-03

Unfortunately, the trigeminal neuralgia I get in my right cheek is back, with a vengeance.  I started to cut down the number of pills I took for it each day [they are very strong, I felt better, and thought that I'd slowly decrease them from 9 to 6 pills].  BIG mistake.  This never happened like this before.  Yesterday and today were the worst. I was talking on the phone and couldn’t continue.  Not even to say I am in pain and good by. If I continue moving my mouth when I eat or talk, I get more and more shocks. It is like being electrocuted. Today I had to take a percocet which upset me [I didn't need one for any of the surgeries or radiation]. But I do have some relief now. 

 

We have about 200 people for the luncheon.  About 150 of the guests, so far, are AMC fans so you can pass those statistics on to Sunny and Vincent.  People are coming in from Michigan, MD., FL., CA., just all over.  A lot of the draw seems to be Atlantic City too. People ask about staying for the weekend.  We found all this out because sometimes people us call first  with a lot of questions so we ask them [if Vincent wants us to do an informal  survey, we can start now-if he has any specific questions you could even hand out a little questionnaire that day].  There are a group of people coming from the Rebecca Budig fan club, some from Cameron's,  and some of general fans of the show.

 

11-24-03

Sorry I couldn't continue talking .  The trigeminal neuralgia came back around Friday, and it is worse than any episode I ever had.  I had to take a Percocet, the pain was so severe.  It did alleviate most of the searing shocks yesterday and I got to eat a small dinner.   Another challenge.

 

How quickly things change, as we two know by now.  Last week I was dining at the big new casino booooofaye and now……This morning  though it was worse, if you could possibly imagine.  I couldn't even swallow the Percocet. To put it thru my lips was a feat and to take in water and push it to the back of my throat was blinding pain I kept getting painful bolts that wouldn't relent].  It took two hours to get down a piece of French toast. 

 

Tomorrow I have an appointment at a local neurologist I have seen before but I know this is beyond him.  I will go for a cranial sacral massage since I am desperate and got the appointment at Seashore Healing Arts .  I can't begin to tell you the pain - to the point of passing out.  We are investigating gamma knife or injection possibilities.  I really may have no choice.    I can't live on percocet the rest of my life.

 

I told Alan if I wanted to kill myself by swallowing pills, I couldn't even do that since I can't get them in my mouth and down.  I had to use a white board to communicate to Alan because talking would start a chain of shocks.

 

You'll be happy to know I finally was able to reach Karen Southwick by phone [and my nerve was heavily sedated so we talked about a half hour].  She seems good.  Considering.  Her ordeal, as we know with this thymic cancer, is different than ours.  As your Dr. Smith says, no two are alike. She has had no surgery or radiation [it was too spread out].  The chemo and xeloda kept it from getting bigger but no shrinkage.  So she has all her hopes in the Iressa trial.  We had a bit in common - only a few years apart in age, no children, both have husbands named Alan, and she writes computer books.  She is a very pleasant person and we will stay in touch.

 

11-25-03

I think Dr. Anastasi is a D.O.  We started going to D.O.'s when we lived in Phila. and for the most part, we like their attitudes better and how they involve us in the decisions about OUR health care.  Not sure if he is affiliated with any particular hospital - I do know that one day a week he is at U. of PA. working. He prefers we go up there.

 

We have been warned about 'shore doctors' and there are a few we met up with that we have horror stories from... especially one oncologist in Somers Point comes to mind.  For anything serious, of course, we go to Phila. or wherever the expert is.  But there are bad drs. everywhere - that is why I am suffering from this trigeminal neuralgia that a dr. at University of PA. caused.

 

11-26-03

Like you, we have always enjoyed being homebodies. It is far from boring ---we think it is the opposite ...utopia,  to be lucky enough to realize what you really like to do. It is ironic how people buy all sorts of great items for their homes [audio systems, kitchen appliances and gadgets, exercise equipment etc.] and then  they don't stay home and use them.  When you just get your house the way you want it, it is better than being away, we have always felt. 
 

Thank you so much for your wonderful offers. Words can't say how much we appreciate you just being there and we are so glad you came into our lives.  There is nothing to do for me and my illness.  It is not like I need food because I am not eating much.  And Alan takes care of all else.  Even doing the multitude of phone calls that I usually make. He doesn't like that. He'll do most anything but doesn't like the phone.

 

 We canceled going to Phila. because of me. It has been a rough week. Another challenge and another disorder 'they' don't know too much about.  I am a drag. The mornings are the worst and they get longer and longer...today the severe pains lasted till 2:00 and later I tried to talk to some people in the fitness center.  But my nerve cut me short. 

 

Even at the dr.'s today, I'd start a sentence then the jolts would start, and Alan had to finish for me.  I saw 2 neurologists within a day [for good measure - just to see if anything new is around].  Of course, it isn't.  They say the same as the drs. I had up in PHila.. I used to see.  No progress in this disorder either. And of course, I hope this brutal pain that the doctor from HUP gave me, returns to her someday.  I even put her photo on my voodoo doll. It is impossible to think another human could do this to another.  Like a Nazi experiment, I thought today when I couldn't even swallow a drink with my pills . One never really knows; you go to these drs. very trusting and assume they will do their best.  We know nothing about their beliefs or prejudices.  The nerve started shocking back in my throat area so liquid would not go down.

 

He wants me to increase my  neurotin for a week and if it doesn't help we'll try a new med in addition.  Both drs. said the same - they'd just use a different NEW med.   I agree [anything to avoid surgery].  In fact, after I told them how this started, they both said they aren't sure the surgery [they say it is brain surgery] would help in my case.  Why am I the rare bird.

 

11-27-03

You really spoil us.  We appreciate you taking the time to bring us over such a gourmet Thanksgiving feast.  Friends like you are very rare.  We felt sad about not being able to travel up to my sisters because seeing my nephew is always a highlight.  But your thoughtfulness brightened our mood.

 

Hopefully tomorrow I will be able to enjoy all the goodies. It all is so beautiful...especially the desserts.   Please send me your parents' email address [and regular address too].  Alan said you, and they, must think an awful lot of us for sacrificing one of only two drumsticks on the bird.  We were so touched by the entire gesture.

 

Today was bad again - a blur - I try not to take the narcotics but the blinding pain sends me to the bottle.  Even a plate of soup was agonizing.  It was very trying to get the spoon near my left side of my cheek without sucking the soup in but kind of placing it near the top teeth. It is quite impossible 100% of the time, if you try it. I feel so horrible for Alan watching this; he feels helpless as he watches me jolt from the piercing shocks a wrong move makes.

 

11-28-03

Heat on the outside feels good for only the time it is on it.  Ice chips in my mouth will numb it temporarily.  Not enough numbing occurs though, to eat  when the spasms are as bad as they have been this week.  I have a 'miracle mouthwash' left over from the radiation - I would swallow it before I ate to numb my esophagus so I could get food down. It doesn't help this nerve though.  Lidocaine patches on my cheek do nothing.   Tried ambesol, hot pepper cream, etc.  I am at my wit's end.   Tried my whole bag o' tricks.

 

When they sliced my neck from ear to ear I only needed Tylenol.  When they used the ginsu at HUP in May to get out my lung,  they sent me home with Percocet and again, that I did not use. But this benign disorder, I need the heavy duty stuff.  That is why we have not called to come up to sit and talk to you.  I can't talk much at times - it starts the nerve spasms and if I continue to speak, I get more shocks.  Pavlov's dog!

 

Actually, I couldn't eat at all on Thanksgiving.  I sat for hours with a bowl of soup. Only because I knew I'd have to get some nourishment.  Then I tried a soft roll and butter. It was horrible.  When I went thru the period when I couldn't eat, I said if my esophagus ever heals, from now on I am not even going to think about diets anymore. So I didn't and here I am again, not able to eat much at all. Or talk.  Same problems, different cause.    It was the worst day ever and I am blocking it from my mind.  We were very surprised though. Very touched by how sweet most people are. Our friends from across the bay, in Linwood,  brought over 3 plates of their gourmet dinner for us - not that I could eat a bite. But it was so sweet.  They knew we had to cancel Phila. and invited us to their parents' home but I couldn't do it.   

 

Something happened today - the Foundation website is exploding with people who say they have what we have. Wannabees, I bet. They want 'in' to our secret club. Philip Chun seems to have proved himself with the correct pathology so he can gain entrance into the clubhouse. Another lady we think is a thymoma.    So the foundation is doing something positive. 

 

11-29-03

Tonight I just was able to eat some ice cream and cake though. SO let's hope tomorrow is better.

 

 

As for that Penn doctor, I have no way to find out.  I have always wondered; there was a resident in the room at the time, as well as Alan.  But go try and prove it, right.  Any good tips from your years of reading those transcripts?  How do people prove wrong-doing with an evil dr. That is the question of the hour.

 

So many people say I should sue that nazi dr.   Even though ALan was sitting there and there was a resident [who they can't find in the records of course], the burden would be on me to prove they did this and I didn't have it before. It does not show up in the CT and MRI either, unfortunately.

 

11-30-03

Almost afraid to whisper it, but the medicine may be starting to have a small effect now. I ate breakfast today and dinner with less spasms.

 

12-1-03

The prayers from everyone are being heard, thank God.  Today was better - the drs. were right; the high doses of the nerve meds are necessary, too.  I was able to eat a little better.   And I am talking.  Whew.  I never thought I'd see the day. A friend looked up trigeminal neuralgia on the internet and was surprised how it was described [and the pain]. 

 

Like you,  I am getting bountiful messages all day and all nite to increase the size of organs I don't have [and I am not thinking of my lung or jugular].  Some of those ads really cross the line.  Whew.  I never thought I'd see the day.  You are right how the drs. stick up for each other; and they don't even have to because they deny deny deny.

 

12-3-03

We went over to Linwood's Beth Israel, to help with making the Manna meals
yesterday.  I actually was able to sit and eat lunch with no one knowing
about the twinges [the small ones I can take].    It is very nice how the
chef makes this delicious lunch for the volunteers and we all sit around a
table and eat and chat.  AND I COULD DO BOTH.  It is the small things in
life that we have to enjoy.  Modern medicine is wonderful.

It kicked in just in time.  Big eating this weekend.  The big Manna
fundraiser dinner is this Sunday.  Twenty local restaurants cook; it is some
happening.  You get hors d'oerves, then the 20 trendiest restaurants  [that we don't frequent all year] have an entree to serve you.  You can have as many as you want. Oink.  And then there are the desserts - oh my, last year crepes were made along with the obligatory pies and cakes. We don't eat out often so this is fun...we have a good group going. Hopefully the Prince and I will get to dance - they have an orchestra.  It will be  the first time since the lung surgery. A milestone. It is nice when life can resemble 'normal' again. We don't eat out often so this is fun...we have a good group going.

 

12-4-03

Like you I lose my patience with people that don't understand what we are living with.  Worse is those that minimize what we have - so often people have to go on and on about their blister or wish to have cosmetic surgery, like undergoing the knife is such a picnic. And like a blister is the same as cancer. You and I know differently.  Then we know someone who is subconsciously jealous that she doesn't have 'something' and chases from one dr. to another to find if they can come up with something for her.  I can't stand listening to her dr. escapades much more...all the tests she undergoes to get negatives...just what we'd kill for.

 

We got a beautiful ad today for the Program book from Trump - it is from the Taj Mahal, Trump Marina, and Trump Plaza.  We were so touched.  That is the closest I'll get to Trump. And the gift bags are really stuffing up - Unilever is giving us some great items [like body wash]. 

 

A man called from Canada today. Suddenly so many thymic patients are getting
in touch with us via phone, email, etc.  Each one has such a sad story.  But
at least we have a repository of material they can all share now, along with
their drs.  We are looking for a common thread.  We are all the same age;
and get this, 75%  of us are scientists by profession.  Frightening.  Oh,
and all were active in exercising and eating well.  Golfers, weight
training, kickboxing [like me], etc.  So much for that! Bring on the
whopper.

 

12-5-03

Here it was 45 degrees and in Philly it was 31.  It is always 10 degrees warmer here in the winter.  The news here said the ocean is still too warm for snow; it will be rain.  I made a big pot of vegetable soup and some of my bread.  And we ate by the fireplace.   

 

12-6-03

 

Do you have a lot to do before your operation?  I had tons to do to get ready since we weren't near home - we took folders of insurance papers [just in case] so Alan wouldn't have to run to the shore.  I tried to pay all my bills and stock the house with everything we needed for a few weeks.  I always over - prepare. Then I got to lounge and snooze and read and watch t.v. when I got home. 

 

We know someone who is subconsciously jealous that she doesn't have 'something' and chases from one dr. to another to find if they can come up with something for her.  I can't stand listening to her dr. escapades much more...all the tests she undergoes to get negatives...just what we'd kill for.

 

This really bugs me - why are billions going to Iraq to rebuild when we have diseases here that have to be people with poor insurance.

 

Then we took a ride [in the non-snow]  to the glass outlet - the last weekend for the sale ---remember I told you about the crowds a few weeks ago.  Today, we sailed right in. And bought a ton o'stuff.  Great buys.   We want to give each actor some presents for coming down from N.Y.  The items there are really high quality.  Alan found them on the internet for 4-7 times more money than we paid.

 

We got some more matching gifts for the celebrities - we figure we may need 12 gift baskets so we got more book ends and some pzaltergraf plates.  I found one china bride and groom for the top of a cake [Mikassa] for Gail.  I found a few vases, a few neat decanter and glass sets [never saw them before], a few Looney toon carafes [a whopping .75 each], some crystal collectibles [this time they had elephants].  Our cart was loaded to the top- we needed some holiday gifts since we have a lot of parties to go to all of a sudden. Need to do juggling. 

 

 

12-7-03

I know that nervous feeling you are having all too well.   We were so overwhelmed and wondering how it all came to this, for the first operation.  I feared the future. By the 2nd surgery we were numb. Until the days before.  Then at times I'd get so depressed. I hated leaving my home to go so far away for the surgery and Alan living in a hotel.  And camping out in the hospital until I'd get sprung.

 

I really didn't even think it was me it was happening to.  Especially we  felt like we were falling off an abyss very slowly.  We were told to do things outside so we did - like take a walk and  go out to some stores and the market and in between  we were frightened to death. But so many wonderful thoughts were being sent our way and when we got them, then I knew that  we would be able to handle it. We just need the reminders.

 

12-8-03

Many years ago I was in a trial for a niacin-related product to lower
cholesterol.  It was at M.C.P. on Henry Ave. in Phila. under Dr. Capuzzi.
They threw me out of the program since I got terrible side affects from the
niacin.  The pains in my chest were worse than a heart attack; it bore right
thru to my back.  I am so chemically sensitive.  This was the early 90's.

Oh---Well here is a coinkydink.   I ended up at Penn with Dan Rader for a
few years for many visits when we lived in Phila. Spent many hours there.
And  I was very shocked to find out he is NOT a cardiologist. I asked him
and he is an internist. Who told you he is a cardiologist.  I assumed it
too, as the information given leads one to believe that.   As every other
dr., he only wanted me on statins, regardless of the fact that they caused
trigeminal neuralgia and severe muscle pain in me.  He in addition, could
not interpret an abnormal EKG HIS office did on me.  He told me to see my
family physician who was totally put out by the entire situation.  ANd the
coup was he made a big to do about LDL cholesterol which is NOT an actual
lab test; it is only a mathematical calculation.  So it is a non-issue when
raised.  The poor public.

See the www.thincs.org  site which has now about 100 drs. from around the
world [including an astronaut].  They believe there is more to this
cholesterol issue than meets the eye; most of it is pharmaceutical hype.
Sell more statins...increase their stocks.   I go along with this - I am my
own controlled trial.

 

What a selection at the Manna dinner…the best was the chicken cattchitore and
pasta but there were lamb chops and lots of fish dishes [ugh]. The crepes
with ice cream and hot fudge and whipped cream were my favorite; a tiny
taste of the richest chocolate cake and peanut butter pie were all I could
handle.    It was nice driving to the Manna dinner because lots of houses were lit up [very tastefully I might add] and it was nice seeing that.   

 

The room was decorated with the most  exquisite real flowers [like orchid trees and rose petals suspended in mid air] and balloons.  All evening I kept seeing different floral arrangements and the little details that made the room so beautiful.  ALL the florists [about 20-some] donated all the arrangements and some must have cost hundreds of dollars.    It was all shades of purple - they draped the stage in purple and white chiffon and had little purple rows of lights around the buffet table.  Gorgeous.  It was extremely artistic.

 

It was  on-the-job-training   for us because April 18th we are having a large fundraiser at resorts for the Foundation for Thymic Cancer Research.

 

I have this new unit of measure I use in situations like that.  You know what P.S.I. is? For tires, pounds per square inch. Well I invented C.C.P.S.I.   I should patent it. It is Chocolate Chips Per Square Inch.  I go for the desserts with the highest C.C.P.S.I.  Why waste time on those with high ratios of flour. This made up for Thanksgiving    

 

12-9-03

Did you read the THINCS article on some problems with flu shots.   I decided not to get the flu shot this year.  I put off having one until November 2001-  my sister always reminded me NOT to get one because our grandmother had one [in 1978] and she died suddenly that evening, in her sleep, right  afterwards.  So  what do I do - I change my routine a smidge and get the flu shot 24 years later [in 2002] and promptly get cancer.  Thank goodness my younger sister didn't whine, "I told you so."

 

In answer to your question, it is hard to decide what cranial sacral massage is.  Someone told me about it years ago.  They try to align your head and spine by massage - their belief is if this balance is off you will have various pains.  He used a level...did you get that...he put a level on my face and in my ears [I made him clean it with alcohol first].  He said when we started, I wasn't 'level' but he 'made' me level.  I don't know ---I am too much of a scientist to put a lot of trust in this.  Some of it makes sense for certain people with certain disorders but mine was too anatomical to respond.

 

12-10-03

Emily told me about a neighbor of hers in Linwood that has all kinds of  gift items for sale [toys, jewelry, clothes, etc.].  I am not sure what; she has done this before.  I said I'd go over.  She even takes credit cards.  Do you want me to be on the lookout for anything in particular. I think Hanukah [that word has a million spellings...nya nya...Christmas only has one] is around the same time as Christmas this year - probably the 20th or so.

 

Today it was kind of balmy-ish  so we got a nice walk in to the bank and C.V.S. [gotta keep those neurotin on the shelf - can't imagine what I'd do without them].  And bought some lottery tickets -it is up to near 60 million.  Wouldn't that buy me a nice administrative assistant for the foundation.  I am ready for that.

 

In the late 90's a friend's son who was going to naturopathy school & suggested I take those red rice pills from the health store.

 

Within one week I had trigeminal neuralgia - sharp shocks in my right cheek.  Then we looked it up on the internet and found it had a derivative of the statins.  We already knew I could not take those due to a similar reaction. To recover from the trigeminal neuralgia I had to take an anti-convulsant for 8 months.  I definitely was not in the mood to try the red rice ever again.

 

  I am like a walking drunk.  And never in my life did I get drunk [because I don't drink].  But this is what it must be like.  I am walking into walls and just sleeping or sitting a lot.  I did go last night to the fitness center to work on my neck and shoulder and then went in to the body sculpting class and did most of it with very light weights.  But when I left there, was I ever beat.

 

Unfortunately that dr. back in '96 punctured the trigeminal nerve with her electrode and something is now wrong with it - could be scar tissue - there's not a lot of room in that area so the slightest swelling starts the shocks [ the nurse told me today that she has seen patients that sneeze or cough and it starts up].

 

We only watch comedies [well, Alan likes C.S.I. and a few other noisy shows].  If the shows don't make me laugh, I don't watch. There are some really good writers out there with the actors to carry it off.

 

It is still very difficult to wear clothes comfortably. My neck is so sensitive and I have drawers filled with turtlenecks I think I will never be able to wear again. 

 

When I had the recurrence in March, I agreed to start taking Valium.  It does keep my head clearer and if internally it quiets me [not any way that I'd notice] then maybe that will help my immune system somehow to fight this.

 

[thymic] scanxiety

 

Cancer does change lives, we are finding out, and especially finances.  I know you said you stopped working and we have felt it too.   Alan did a lot more writing before this started. Instead of doing the computer books now, which have strict deadlines, he is writing the novels he always wanted to. This way he is free to go to drs. visits, etc. and not be constantly writing if something else comes along.

 

Who said Cancer isn't the gift that KEEPS TAKING. 

 

12-11-03

 

I do appreciate our communication so much.  I guess misery loves company when you are in this situation.  Having another person to talk to, that understands, is wonderful. People we know that have not lived this have no clue. One person we know keeps calling up,  for example, and saying how long will your voice be this way?  It is over a year since the radiation and we repeatedly have told him how the nerve was burnt and this is as good as it gets but he doesn't proceed to learn...that is what drives me nuts.

 

Like you being there day in and day out for your mother, I find Alan is amazing; there is no way to describe his strength.  What he has to witness day in and day out...it has to be hardest on him because I don't 'see' me. It is not like I am looking in the mirror all day seeing me; but he sees.  I do feel so sorry for the care giver.

 

We just got items you'll find interesting.  There is a local artist [must be high 70's] who makes these miniature puzzles.   They donated 2, one a Jewish star.  www.jemidanny.com  is where you can see his work.  Tell me what you think.  He does watercolors too, that are mini.  My eyes could never do that.

 

Alan started taking pre-bids for some of the items.  One person has already bid $300.00 to sit next to Cameron Mathison. Another has bid $125.00 for a signed basketball.  This is - to me anyway - part of the 'day' of the luncheon. I savor each moment of this action.

 

You are sooo funny; you made me laugh.  The ‘last supper’ really describes it and they make you feel like there won't be food ever again AFTER SURGERY. The weeks before each of my operations, people would overwhelm me with wanting to meet for dinner.  And how many meals can one eat out and especially if you are facing surgery.  They don't realize you just may not be hungry, like usual.  Like if they haven't been thru it they don't get it that you kind of lose your appetite and would appreciate another token of their affection not centering around food. 

 

12-12-03

This is THEE shopping place for you.  I will have to tell you about our friend Emily's friend; it is a secret in Atlantic county.  You'll have to go to see this some time. It is awesome.  On Sea Garden Court in Linwood.    She has a store in her home [secret...not allowed by the township and she has fought it since others have catered or made chocolates or do accounting form their homes].   Anyway the things she has are awesome.  Jewelry, hair ornaments, clothes, and different things like monogrammed bath towels that you wear after the shower.  

 

Today it is up to Phila. to see the radiation oncologist at Hahneman and then the thoracic surgeon at Penn. 

 

WE MADE HISTORY.  We had TWO thymic patients in the same room!!!!!! At the Four Seasons.   In May, a young man emailed the Foundation that his aunt was in a horrible medical state - no one could operate on her thymic cancer. It was all over her chest, heart, lungs, etc.  She had fluid in her lungs, couldn't breathe, etc. Her name is Mary Lynn and lo and behold she lives in PA. not far from where we hailed. She went to Dr. Loehrer in Indiana and he said they could operate.  She went to the same thoracic surgeon I did at Univ. of PA.  Dr. Kaiser.  We had our surgeries this year, a month apart - Me in May and her in June.

 

But here we are ---about 100 miles from each other and each with this rarity. We emailed and recently she 'proved' herself to be one of us by providing a proper cytology report.  See, you never get our of school and 'doing reports.'  So after the drs. visits it was nice to top off a day of drs. visits with chocolate and sweets.    At least she was there, drove herself, looked lovely, and ate [only thing she can't do yet is talk above a whisper].  She works at Widner for a v.p. and is a sweet lady [54] who has been thru so much. Her husband just had bypass surgery on top of it all.

 

Today we had to go to the Radiation Oncologist and Thoracic Surgeon in Phila. for the 3 month check up.  So we told her  we were coming up and making a siting in Philadelphia [it is so rare these days].  Anyway she wrote back yesterday that she would meet us at the 4 Seasons after our appointments for high tea.  She was really looking forward to the tea there in the Swan Lounge because she had never been.  Among other things during this historic meeting, I taught her about your cancer prerogative - it is going 2nd generation now.

 

The radiation oncologist found out there are also some very new treatments for the trigeminal neuralgia. Finally.  He is contacting the head of the department on my behalf. He also said there may be a monoclonal antibody treatment I can get if my next scans show the lit up spots have increased.  I was pleased he did this research and he knows we'[d go home straight to the computer and look this all up. So that is what Alan is doing now.  It seems a monoclonal antibody can go and kill the cancer cells but leave our healthy cells alone. Certain ones for head and neck cancers have been in trials since 1992.  He said it is an injection and you don't lose your hair.  So I told him to sign me up. What do I have to lose.  He and my oncologist at  PENN are at great odds, to say the least, I found out.  They each want a different approach.

 

Don't we get a full dance card?  The drs. are wonderful and trying to find a treatment regime in case the next scans show any problem areas.  Dr. Evans at Penn wants to wait before administering any chemo since there is no large mass now. She feels why make me sick because if there is nothing there, it may not act as a prevention.  There have been no trials for this.

 

Dr. Brady who is renown is the only one who feels I should be on chemo. BUT HE CAN NOT GIVE US A RECOMMENDATION OF WHAT THAT CHEMO SHOULD BE SINCE his specialty is radiation oncology. The 2 have spoken and have fought.  Dr. Evans wrote us that Dr. Brady cares very much for me so she understands.  I guess that is why he is looking at a monoclonal. It is a hard position to be in since this is ground no one has tread on before.  Some of the other thymic patients are on chemo but their situation is different - more dire than mine.  Huge masses that are inoperable! We will see who responds to what.  My guinea pigs.

 

This is the problem with a rare cancer; no one knows what to do. So we watchfully wait, as they call it.

 

We are praying there are some new things on the horizon for cancer...Friday was a loooong day.  Then my surgeon at Penn checked my lung and looked at the October scans. He also wants to wait 3 more months since he doesn't like Pet scans and my cat was stable. My cat scan  was missing [we think somehow it got left behind at the first hospital which was annoying since it is 4 hours round trip for driving there].  We were going to get copies and mail them up there  but then we  found out that someone else's films were in my scan jacket so now we are wondering if my drs. read the correct films. Is that sloppy or what.

 

The Surgeon at Penn is supposed to work miracles, my sister told me she heard.  He gets patients coming to him from around the country.  He has warmed up - personality wise - and we were pleased with the fact that he stayed a bit to chit chat.  He programmed into his palm pilot, the April event so we hope he comes.

 

 12-13-03

You have the right idea.  There isn't much we can do about our diseases since we have the best drs. that are doing the best for us, so we may as well enjoy ourselves while we are feeling well.  But isn't that what everyone should be doing.  It is just that they don't know what will come to them or when.   In a sense, we are lucky because we won't be wasting one minute.

 

12-14-03

Like you we are leaving no stone unturned.  Alan has been tireless in doing research daily now for 2 years. 

 

 You are so right about not being able to put a value on abilities such as speaking, walking, etc.  Most people have no clue as to how lucky they are.  They continue to abuse their bodies and waste time doing meaningless things in life.  There were a periods when I thought I'd never be able to talk on the phone again. Like you, I don't just take it for granted.  I give a sigh  of relief whenever I can make a call. Simple pleasures are composed of the most basic acts.

 

12-16-03

The other day when I was at Hahneman Hospital in Phila. in radiation oncology for my check-up, across the hall was the smallest child [maybe 5 or 6] wandering around with the mesh mask on his head.  It gave me the chills, projecting what I felt when it was on me to what that poor little will undergo.

 

When we were at the Make A Wish luncheons, they would bring some children with cancer - in whose wishes were granted - and it boiled me that they had to go thru what we went thru.  No chance at life yet and no chance to do what they want, yet saddled with cancer.

 

There should be some heavenly mandate that each person only endure it once. It is Job-like to make people go thru consecutive rounds of cancer treatments. If it were innocuous like an aspirin, we wouldn't complain.

 

We are the same way.  There is a narrow window of time that cancer treatments let you be awake. The summer before last when I had the radiation, a couple invited us to come over for dessert [about the most I could eat then].  They said how about 7:00.  It was a stretch but I said ok.  If I was someplace right at 7:00, most of the time I could last an hour. But to leave the house at 7:00 was no go. SO we get a call from them and they wanted to make it at 8:00.

 

It seems - get this - the day was 'so beautiful that' they 'just got off of the beach."  They wanted to sit there and relish it and they hadn't had dinner, and blah blah blah.  Well, lucky for them they weren't in my hell where I was forbidden to be on the beach [reflexion of sand on the burn,etc.].  They could have every day as a lovely day; I wasn't getting one.  Needless to say we didn't go.

 

This should make you laugh.  It is under the category of 'true Barbie experiences.' Today was hectic. You should have seen it. This huge delivery truck [it was one of this hughmongous 18 wheelers] pulled up to our house.  First of all...this is no easy feat when you live on an island since that truck, like any other vehicle, has to get here over a bridge and not all the bridges can take that weight. SO he pulls up to the surprise of people watching [snoops abound in a small town ---hey, there's a rhyme].  ANd he starts to unload PALETTES of boxes.  This was the donation from Unilever [formally Lever Brothers].  Dozens of boxes with items for the 250 gift bags we are making for the guests. We had to store them in our neighbor's house [she said it was ok - they aren't here all winter].  It is body wash and creams, etc. It is worth thousands of dollars.

 

Then we picked up in Phila. the painting that the dr. is donating.  It is worth $5000.00. 

 

12-17-03

From writing to many of the members, I find that some want to 'forget' cancer every chance they can.  Kind of like a short mental vacation from thinking about it [since it never leaves your mind].

 

I know what you mean about beginning treatment is in a way therapeutic.   When I was first told my biopsy had cancer cells, I was left in limbo for about 2 months until the surgery and final diagnosis and it seemed like forever till we decided my treatment plan. 

 

Boy do I know what you mean. I have felt totally without hope at times because my drs. do not say to me what my friends' drs. do.  That is, "don't worry...whatever you have, we have a treatment for." Those are words I never heard. My friend has non-Hodgkin’s lymphoma and her dr. has such a long list of different treatments to go thru before she should ever contemplate giving up.  My thymic is odd too they say.  It is ECTOPIC - it was high up in my neck.  THymic tissue should always be behind the breastbone.  SO each dr. says they never saw an ectopic one before and where I had my first surgery they did an article on me.  It is being presented in Jan......what a way to get 15 minutes of fame. I am so tired of being different.

 

 

You are so sweet - the best.  Thank you for such caring.  I wish I knew how I were doing. The trigeminal is under control but the neurotin dose is at 36oo mg. per day and it is a bit much.  I am able to function - like made meals, wash, clean [my favorite], and go to the fitness center a little.  So my pain is under control most of the time but I am walking into walls, etc.  When I saw the drs. last week, I told them the benign tgn is worse than thymic. Who would have ever thought.

 

We were  told by an agent for one of the actors that this is 'the event of the year'.  It is being advertised in quite a few national magazines.  "Soap Opera Digest" answered a  reader in their Q & A section all about the where and when of the event.

 

 I can't eat out that many times or have the energy to go from one activity to another.   But there are people coming down who said months ago, to reserve time to see them plus there are people that live here full time that want to something.  What at tug of war.

 

12-18-03

 

We may be getting a great auction item - when we were at the Four Seasons last week for tea, I meant to tell you that it wasn't the same impeccable service we have had before. We went to the Swan Lounge for Tea and were told we needed reservations.  I had called and the answerer said they were not needed.

 

We sat down in another area like two feet from where the tea is [literally] and were told we could have tea there [but we'd get no tablecloth]. Fine.


No one ever came over to our table.  The couple next to us left; another came and were served.  We felt invisible.  I needed water after waiting about a half hour so Alan HAD TO GET UP AND GO TO FIND SOMEONE TO SEND SOMEONE OVER. Meanwhile tea started in the section next to us. It was about one quarter full and never any more than that the entire time.  We got our water and then had to get up and ask again to send someone to take our order.  A waiter came to set the table.  He set down clean silverware on a surface that hadn't been cleaned so I asked for a napkin to put it on.  He hadn't brought them with; he went to get linen napkins.


The cakes were a bit stale and needless to say after all this waiting, we had a chance to observe where the 'real tea' was and it only had a few tables full. Oh, the final insult was that  Alan had to go and ask for the bill so we could leave and get on with our 2 hour drive. It was a bit embarrassing since we told Mary Lynn what a fine place it was.


I wrote that we felt we were owed a gesture of apology for the treatment we received [I told them they could  trace which staff were involved by the date and time].  They definitely were not overwhelmed with customers.  Maybe one or 2 tables were occupied.   I also said that were I to write a restaurant review or letter to the editor, these facts described would be a  deterrent to anyone coming to their hotel. {hahahaaa - that got their attention}

 

We got a call from the manager and he said he will have us back for dinner for 3.  I said I had a better idea that I'd like more...how about donating this to our auction. SO he said fine - dinner for 4 in their fency Fountain Room.

 

12-19-03

Dr. Luther Brady, my radiation oncologist at Hahneman, is a very special person and gave us a painting to auction off. It is a Sam Maiten piece  and is a truly rare and exceptional work of art we  found out.  

Dr.  Brady  is an art collector. We picked it up Friday when we were in Phila.  He has  supported of the arts in more ways than ever.  See Below...Alan got some inform off the internet about him.

Here is how this piece was conceived - he was concerned for the patients who had to have radiation treatments in what he called a “barber shop” atmosphere, which can be a very good way to describe it. He enlisted  artist, and friend, Sam Maitin to help.  He brought Mr. Maitin into the treatment room, laid him on the table, and turned off the lights and left, just as they would do a patient so Mr. Maitin could experience what a frightening experience it was.

 Dr. Brady commissioned Mr. Maitin to create serious works of art that could add a sense of humanity to the treatment process. Mr. Maitin created a series of dimensional pieces to be attached into the ceiling panels, and by adjusting the lights, shadows could play across them to help restore calm to the patients being treated.  How many drs. truly care about their patients this way, I wonder.

 Dr. Brady gave Alan Sam's phone number and they talked.  It was amazing talking to the artist he said.  “Luther commissioned these works in honor of his patients,”  Sam explained. “He wanted museum quality, serious works, that would help his patients through a very traumatic experience.”

 Later, when Dr. Brady moved from that treatment area, the works were removed and enclosed in Plexiglas protected cases. They now appear in museums and collections around the world, thanks to the generosity of Dr. Brady.  There are only nine of them, I think.

And we have one of those Plexiglas cases with one work inside. 

In presenting one of these unique works to the Foundation for Thymic Cancer Research, the work has found its way back to its original purpose -- to aid cancer patients – thanks to the generosity of a humanitarian known throughout the world for his efforts to fight cancer. I didn't realize all this when we first looked at it. It is so ironic.

Alan talked to Sam Maiten so he could write up a Provenance.  Sam told Alan that if he had one of the cases, he would sell it for $7000.00.   Originally we were told it was worth $5000.00 so I can't believe it but I think if people knew the background of the work, it would encourage them to want it.

12-20-03

I inherited MY father's personality too [which he inherited from his Grandfather, Sliding Billy Watson, the vaudeville star].  Who says this stuff's not genetic.  My father's mother was a very non-humorous person, just like his sister.  But my sister and I and her son seem to have that comedic gene. It is the only way I know how to handle this bowl of wax.

 

  I was surprised to learn I had a great-grandfather who was a vaudeville star in 1906.  Only found it out about 18 years ago - he gave W.C. Fields his first job.  And Fanny Brice [ we combed the theatre libraries in the mid 1980's and found hundreds of articles on him].  SO I think handling problems with humor is my best solution.  Some don't get it but it helps me so that is all that matters

 

Sometimes I throw some of his lines in my speech and that stops 'em dead.  I have the old sheet music he sang in his shows and Alan and I will toss some of the lines in our parables.

 

Most of the patients have a good sense of humor and keen wit.  It takes a long time to sink in - Alan sings the old rock and roll song "One in a billion" to me every so often.  Now it takes on a different meaning.

 

 

12-22-03

To answer, there isn't much life beyond the fundraiser. It took on a life of its own -this event keeps getting busier. 

 

We are still trying to figure out the logistics.  We also have to wrap about 50-60 auction items and get those up to the ballroom.  ANd there are boxes of other items we will need that day.  Neighbors and friends said they'll help us cart it up there.  I sure hope so or we will be in trouble. There is the Program book to make with each item listed for auction and the ads businesses have taken out. Not to mention ticket sales - we take credit cards, mail them out, put them in a data base for printing lists for that day...

 

We do get out every day to go to the post office and bank and Staples.  It is all encompassing...busier than any job we ever had. The weather is fine - 55 today. We make it to the fitness center a few times a week so we can work on my neck and shoulder.

 

12-25-03

We know some that eat out 5 nights a week, go to expensive shows, take expensive cruises, etc.  You get my point.  But when I told them a year ago about the luncheon, it seems it is too expensive for them to buy tickets.  Like you said, if they'd forgo one or 2 meals out, they'd have the tickets.  You can guess we won't be seeing those folks again.  We managed the whole illness on our own.  How they can't forgo one meal out is beyond me.

 

12-29-03

We had a bit of trouble on the way home.  We took a 'short cut' down Baltic Avenue and were stopped by a police action...checking DWI. We only had water [due to all our meds] but I was exhausted and the lines were long.  We couldn't turn around so we waited our turn behind dozens of cars, undid our seat belts thinking we'd have to get out of the car, wrapped ourselves up in ponchos and put up the heater.  The police came over and called out "No seat belts, no valid inspection sticker."

 

We explained why we undid the belts but were shocked about the sticker.  We never missed a one in PA. or here.  Ever.  So we thought they had to be wrong.  But the sticker said AUGUST 2003 luckily they let us go to the lane on the right side [which was shorter] and let us go.  They looked at our insurance card, license, registration but said nothing else.  I had a PBA sticker in the windshield - who knows if that helped or we will still get a ticket in the mail at some point.  But the line on the left was endless.  SO we felt lucky to get out of there.

 

The whole point is the neurotin somehow numbs up the part of the brain that helps me make my proper lists to get things done.  That is the only thing I can think that caused this; it makes me angry at myself. 

 

12-30-03

The other day I spoke to a thymic patient in San Francisco, Karen Southwick and she is really up on the latest trials. She told us of drugs that we had no idea were available.   Her Iressa is not working as well as they expected, unfortunately.  Her tumors have not stopped growing or diminished.  They grew a little.  She is worried because one is near her spine.  It was not a pleasant conversation.  She is terrified it will grow to a point to press on the nerve and paralyze her.  I was at a loss for words and did not expect for what she said next.  She was discussing her options to end her life.  She terrified me.  She is flying to Indiana to see Dr. Loehrer and we hope he has some help for her. Any help.

 

We are praying that science advances in leaps and bounds this new year,  in the field of cancer treatments. We are reading about some new exciting drugs so may they come out soon.  We just never know what these drs. will discover and when.  So we need an extra measure of strength to wait it out.

 

Anyway, remember last year at this exact time I had the PET  testing and waiting, last Dec. 31st, New Year's eve day and the dr. actually called to give me the report.  It upset us enough to cancel all of our plans so this year, I have had such  a taste associated with New Year's that we made no  plans.  We have old friends Sherry and Neal and Sherry was my friend in high school and is very sweet.  We will spend New Year's together with a quiet home cooked meal, the way the 4 of us did many decades ago. They have a summer home here and are coming for a long weekend. I will make challah and chocolate cake and she will make lasagna and a salad.

 

You have been such a help all along, for which we are grateful for every bit of support you have shown in so many different ways.  Which is more than we can say for some people, which I will put in a bubble and float away so they can't dispel negative energy around me and my immune system.  There are more stories than energy in my little typing fingers.

 

1-1-04

We like to ride our bicycles on the boardwalk with the hopes of glimpsing a star. Never have. We are about a 20 minute bike ride from there., living at the southern tip of the island in a residential area, the opposite of Atlantic City.  It is a beach resort town.

 

Did I tell you we now heard from a man in England [42] and he was diagnosed with...what else.  Maybe we are up to 20! 

 

1-3-04

I am up late again because of too much Chinese tea. We went out to Billy Ho's tonight in Margate and what a 360 from last week at Susanna Foo.  It was so delicious.  And there were noodles on the table!  Georges Perrier doesn't believe in potatoes and S. Foo doesn't believe in noodles.  For 6 people, our friend, Patty [who you must meet one day] ordered 2 pu-pu platters and jeez, do I love greasy food. It was half the cost and such quality.

 

Patty's date lived 3 doors down from Billy Ho's and insisted we all stop over afterwards [Alan and I had planned an early night...never happened].  He had a Yamaha piano and was a concert pianist; Patty's friend Cheryl's date played too. Both entertained and dazzled us with their talent;  the one man, now a dr., started off the same path. He was outstanding also. I performed a Chopin Mazurka. Poorly compared to those guys.  It was kept upbeat. Poor  Cheryl has lymphoma and starts preparations Monday for a stem cell transplant.  It sounds brutal and I just kept thinking I hope it works out better than my old friend from Phila., LouEllen's.  Cheryl's  boyfriend is a dr. in Baltimore and is overseeing things. Cheryl lives in Harbor Pines.

 

Next is to make my appointment for my 3 month scans ---near the end of the month [the nerves start to tremble, don't they, even planning the visit to the imaging center].

 

This unfortunately is the reality so many cancer patients experience. There
has to be cures and treatments out there to eliminate the suffering soon.
It has to become a priority. Yet I heard on the news today how our
government spent millions for golf courses, and other plush facilities for
some elitist staff.  Makes you want to hit the roof.

 

We just got back from Sicklersville where we met Adam and Phyllis for dinner at a place called Villari's.  It was very nice - there was a wedding going on at the same time out in the garden at a gazebo.  What a picturesque scene. Adam was moderately quiet and Phyllis is a bit quiet too so it was the opposite of our dinner last night.  I should have been a dentist ---it was like pulling teeth at times and a strain on my throat keeping up all that conversation. 

 

1-4-04

Thanks for admiring my energy...which is depleting quickly.  We just got back my thyroid blood tests and one is very poor which means [as if we didn't know], that the thyroid is not working.  I am taking synthroid but it isn't enough.  They burnt the thyroid during the radiation and sometimes I can't get enough sleep.  A giant coffee will help me get a bunch of chores done and then...whoosh, I collapse into a pool of protoplasm.

 

 It is nice to have this correspondence with you and a few of the others; I  feel so bonded to  many in our elite group.  Also I feel that things happen for a reason. SO many coincidences have happened to me but one of my former students [had her in 1976] says there is no such thing; they are divine interventions.  So be it.  Here's one of them.  I don't know if I told you about  what happened when we stopped by to visit a  neighbor Sandy one afternoon - we sat on her beachfront deck and talked.   She is the one who had Hodgkin's treated in the spring [and did I tell you  her brother has donated some great items to the auction]. Sandy was feeling all alone with her burnt esophagus and no voice. A mutual friend here put us in touch, mainly so I could help her understand the pain.


 Anyway, we spent all summer talking every day. One topic never came up and we were surprised when recently we're yammering and I said how an old high school friend died of cancer last winter .  So she said her dear friend  died of cancer  that winter, and I said, "Well my friend Marcie..." never thinking it could be the same person. She said her friend was Marcie. And I said well my  friend was Marcie Tucker. And she said 'so was mine.'

 Where I left off being friends with Marcie, about 1965, Sandy picked up being  friends with her a few years later.  She filled me in on everything since 1965 and I filled her in on pre-1965.  

We just sat there talking... filling in all the blanks for each other.   Surreal. But the most ironic part of the story is that Sandy and I were introduced to each other a week after Marcie died - introduced via email by a mutual friend.  Marcie's daughter is now emailing me and I am sending her photos we scanned from as far back as 1961.  Everyone feels Marcie has sent Sandy and I to each other to help each other with our ordeals.

I have to stop watching the news; it is so frustrating.  First the money going to the space program.  Cures and treatments out there for cancer has to become a priority.

 

1-6-04

Today was a check up at the neurologist; he would like to see me decrease the neurotin [me too!]. Mainly because I am like a slug on it.  He said I am more patient than most of his patients.   He said if I have pain upon the lesser dosage, I can start one of the new RX's he gave me. If that has side affects, and the pain comes back, then I go back to neurotin. It is my call. 

 

I am beginning to like him better than when I first started with him a year ago.  He has more personality and just started chatting how he wants to publish a book. That kept us going a while. It was kind of nice and Alan likes to help people that way.

 

 Because what we have is so rare, the drs. do try harder, listen more, watch constantly and contact authorities all over the world on our behalf.  Even though I haven't had chemo I know how you feel about the routine. When I had the radiation, I felt like I could not drag myself in that hospital one more day, It was such a trek of epic proportions some days since I was so burnt and in pain.  I wondered if my old life would ever return, it was boring to sleep all the time, and all the other emotions you mentioned. I don't know where this is going but anyone that has had to give up their normal days for these visits and treatments just knows what is in the mind of other patients. That is why I fear my scans and what it could bring.

 

There really isn't anything I can think of to help you endure this next chemo. All of your adjectives in your update are just scratching the surface, I am sure.  Our language has no words to describe the ordeal.   I am at a loss as to what to say so I just filled the email with 'antidotes' from the Barbarella log. Maybe at least if you chuckle once, that will help.

 

 We thought that around this point in the planning calendar, we'd need to hire a public relations firm, but the event took on a life of its own.  We never realized what a popular vehicle this type of event could be.  People from all over [Kentucky, VA., R.I.,  and far away places] are calling and begging for tickets [they want to pay $100.00 each to get in].  For now we are just making a waiting list. If some tickets aren't picked up or we get brave then we will sell more.  We never realized what a popular vehicle this type of event could be. It all depends on what my next scans show which are January 26th. Life kind of stops around those days.  Just trying to stay calm.