March 27 to May 8, 2003

 

 

3-27-03

 The cardiologist is another story - she will be on her way  out of our list.  I faxed her today and asked for a call back. Nothing...and after such a serious report. Tomorrow I call her personal cell phone.  Now I need to find a new
cardiologist.

 

The CAT scan revealed THREE spots now on the right lung, 2 suspicious lymph nodes, and something in the upper abdomen.  We only spoke to the radiologist reading the scan and he said that the more spots he found, the less likely that they were nothing.  So there would have to be a biopsy to prove it is the same al quaeda.  If not the same cells as before, then it is a new enemy.  As for taking the biopsy, we need to figure out whether to have it done here in the hospital or up in PHila. Or come up to Phila. to get another opinion on the scan from a thoracic surgeon.  Or to wait for the CAT /PET scan in a month. We are [all at the same time] frightened, numb, can't even focus or think straight, and don't know even what to do.  We are waiting for some of the drs. to call and give us some direction. 

 

 I don't expect any help from the cardiologist. I called her on her cell phone today and she said all my results are normal so she put me on the back burner [to paraphrase]. I told her about the scan results and they are NOT normal and she obviously hadn't seen them.  She said she'd call back and didn't so now I have to find a new one.

 

Going thru the CAT scan today - I kept telling myself - that is nothing compared to what the road ahead might bring.  For the CAT scan they insert the I.V. needle kit in your arm and it is hooked up to the contraption that releases the radioactive tracer.  All this before they slide you in the machine and then at the right time, they release the dye - tracer [which makes your whole body burn] and then when they take you out of the scanner, they take the I.V. line out of your arm.  Like you we are praying for a miracle.  One is needed big time now.

 

3-30-03

It was good reading your words and we could feel strength emanating from FL. all the way up hear.  We hope your words are true, true, true and these spots are not malignant.  But we have noticed a change in our drs.  From being casual and laid back, suddenly they are moving fast.  All along they said "So wait till the end of April for the new Pet/Cat scanner to be running" and now they are starting to have me see a medical oncologist right away.

 

It is so difficult to believe how everything was going along fine here until Monday.  And now, all hell has broken loose, and making a reality every cancer patient's fear.  We spoke to the various doctors [ the radiologist reading the scan, my primary, and my radiation oncologist],  they said that --- get this -- - the most fear-inspiring words you could ever hear --- they all want me to see an oncologist to decide the path we have to take now. I bet I lost 5 pounds this week with fear and not being able to eat.

 

 They got me into Dr. Robert Goldberg in Somers Point on Tuesday morning.   Probably, they all think, the next step will be a biopsy.  But they want his opinion and direction. It won't help to get any 2nd opinions yet......there has to be something to give an opinion on.  We have the names of several oncologists to consult when it is time.  There are our illustrious board members on the Foundation. But it is agreed, that unless we want to move, we need an oncologist that is very close by. We are in a better position than a year ago because then we knew NO ONE.

 

So much for the one year anniversary.  We passed it by a day.  We are  praying for a miracle... like a tiny corner of my mind has this dream that says let these spots be new shingles [I actually felt new pains similar to the shingle pain on the left].  Oh, let it be shingles - pray for shingles.  We also pray for  maybe some new treatment ideas.  One is needed big time now. The thought of chemo down the road is ......no words. Nothing scares me more than chemo...not even death.

 

The Cardiologist finally called this morning. .  She was the only one that had not called all week. She saw the report and realized how important it was.  She is definitely not perfect but for the time being I will stick with her because I have to use my energy for the other drs. She is ordering a stress test because she doesn't want me to have any biopsies before they are sure I wouldn't have a heart attack on the table [that would be preferable to chemo ---just check out quickly with no torture].

 

We're back to being numb and walking around in a fog. 

 

I had been wavering back and forth about not staying in the campaign for the Board of Education but decided to keep on going.  It doesn't remove these huge weights I feel pressing down on our shoulders or diminish the dark funk I feel but it does take my mind off of it for a  short time.So we forced ourselves out of the house and walked around 3 or 4 streets and handed out my flyer. It is always uplifting meeting people since they are so friendly here.

 

We spoke to Harold today [retired radiologist] and he helped restore calm for a minute.  He said they are comparing apples and oranges at this point. The PET scan measurements of a growth are physiologically determined he said and can not be equivalent to CAT scan measurements which are anatomically derived.  He said the amount of millimeters my spot has grown may well be within the normal range of differences.    That was one interesting point.

 

He also urged us [which we were going to do anyway] to contact Luther Brady on Monday [at Hahneman] since he is one of the top 3 experts in the world on ALL oncology.  He's dedicated his life to it and  knows minutia.  Harold said he can recommend closer drs. that are tops and what step is next.  When we saw Dr. Brady in Jan. he was not concerned with the spots and dismissed them.It is frightening at the wide range of reactions drs. shown to one patient.  Meanwhile we are living a torment since the words 'chemo', to me, signify systemic involvement and not a good quality of life with no guarantee I'd survive it or be any better for any great amount of time afterwards.

 

This latest siege with the spots on my lung and abdomen are just overwhelming since I am not healed from the last siege  My body has suffered from all the surgery and radiation and I am not ready to handle more invaders. The news just propels you into a dark place because it means an uncertain road ahead and one filled with pain before healing, if that is meant to be. It is too hard to explain. But that is scary. It is even hard for someone to imagine it or roll playing because the fact that it is not real doesn't put the same fright in you.  Except my friend in CA. who called tonight and said that once in a while she has a dream that is so real, where she was told she has cancer

 

We all know life is finite but don't know when it is going to end.  When a dr. gives you news like this, you just know that your end is a lot nearer and when they mention oncologists, then you know it isn't even going to be comfortable. 

May you be right and I don't fit the mold and this is some benign situation that is strange. The liver story was so good; I love stuff like that.

 

Today we tried to walk thru normal motions, like go to some stores at the mall, but it is hard to get enthused about anything.  I remember last year well - why buy something I may not get to use.  You can't help it. 

 

3-31-03

At night, it is the worst.  Even for others - Harold told Alan that the night I told him the latest news, he couldn't fall asleep till two in the morning.  I suppose, all of us are mind-melding in the wee hours so let's try to push positive thoughts into my cells to be normal already. 

 

 We will be up Monday to go to Hahneman - Dr. Brady called us this morning and he said not to rush into anything until he looks at the films AND the report.   He was going to fit us in tomorrow but Dr. Goldberg fit me in here [yes, he is a  medical oncologist [  that is a chemo dr.].  As opposed to Dr. Cassir who just calculates your radiation dose.  Didn't you always want to know all this. 

 

Yes, I will take the shingles.  Everyone is praying it is the shingles infection.  Funny what we pray for at times...there's the humor in this.

 

4-1-03

It was also sweet of you to write such caring words.   Alan has always been my Prince Charming, so dedicated and takes care of everything, effortlessly.  So you are right - he is a blessing.  Thank goodness for him. 

 

We just saw the local oncologist today that our radiation oncologist sent us to. From the radiology report, he feels that my cancer has spread to the lungs. He has recommended "palliative" chemotherapy without having a biopsy of the lung mass -- he feels there is more danger in having the biopsy than with the chemo. We don't know what to think at this point. The visit took us down to the depths.  It was a big downer, which is an understatement...  taking away what little appetites we've had.  He feels this spread could have happened even before my surgery last year and there may be other places that metastases will show up one day.  He gave us a potent dose of sadism.

 

From Dr. Brady we are heading over to his colleague, an oncologic surgeon, who will give us yet another reading of these scans. They will advise us also  to what type of biopsy we should seek and by who.  I know I would want the biopsy results  just to make sure that I need the chemo & to be sure I get the right type of chemo for the right cytology but the dangers in lung biopsies are horrible - they crack open your chest to do them.

 

Rich was a great calming effect today; we panicked [you'll see why after you read the following].    And thank you for the offer of Sloan and Florence - it is stuff of what makes you both so wonderful.  We will probably take you up on it and get a '10th opinion'  at some point. There is a Dr. Mark Kris there that has been mentioned by quite a few people.  And articles. Suddenly THIS TIME, we are not rushing.

 

4-2-03

I have spoken to TWO drs. and they said that they found FCCC doesn't treat
the patients as people, but more like a means to a buck.  The more people
they sign up for a particular protocol, the more money the center makes.
Kind of like a course in college - if no one takes the professor's course,
then it is dropped the next semester.

 

Thanks - we looked into them in the Fall, after the first spot.  Vaccines are not perfect.  I have a 20 page application from Columbia - Presbyterian Hospital in NY city.  They are filled with side affects [like chemo] and if you have no luck [like someone you know], it says you can die from them.  It is a big chance. You have to live in NY several weeks total throughout the time you get treatment there.

 

We've been pretty down since we saw the oncologist yesterday.  He totally upset us - it is hard to sleep and we have no appetites.  Plus now we have to go around and make appointments for 5th, 6th, etc. opinions.  More tests have to be done, and it is hard to want any more done to me after the last year.  I just want to be left alone already.

 

I canceled the heart scan he wanted me to have today [to see if it is strong enough for chemo].  Made it for Friday and then canceled it till next Friday.  It is another injection and my arm is still so sore from the 2 I.VS..'s last week.  I canceled his appointment for Tues. and made it for a week and a half later.  Whether this all is smart or not, I don't know.  I am just dizzy and frightened and would rather have that big heart attack or be subject to a terrorist attack - all quick, one boom.  None of this piecemeal pain. I do not want to be made sick and have to heal again.

 

We are not 100% confident in the local oncologist.  That is the problem.  Alan has done so much research on thymic cancer that our own drs. consider him an expert.  Dr. Goldberg said it is the same as thymomas and that is wrong.  The cytology is different.  Even Dr. Kelley told us to be wary of anyone who said they are the same. 

 

When we go to the drs. we have little test questions.  Another error he made was trying to 'grade' my malignancy.  He was using a system for most cancers but not for thymic.  There is another scale for that.  He was upset no one put down the grade my malignancy was but he couldn't do it either.  It wasn't in his book and he was frustrated.

 

He proposed adriamycin [kind of an old fashioned regimen we are learning].  At least that is what the slip said for the Muga scan baseline.   AND......adriamycin can be toxic to the heart.  And look at my poor heart anyway and he isn't taking that into account.

 

Lucille said he did me a favor by saying all these things because now it shows he's an idiot.  She was outraged as were others.  The general consensus is how ignorant of people they have been and they probably never dealt with this on a personal / family level [and that does not excuse what they put us thru].

 

The general consensus is how ignorant of people he had been to want to start a chemo regime to someone without a definite cellular diagnosis.  It's a major step that shouldn't be omitted, a dr. from Harvard wrote us, especially if it is a suspected first recurrence.

 

Yes, medical sadists.  Macho.  All your adjectives fit

 

We are investigating other new developments [Iressa, etc.] though no one knows if they work on thymic cancer because no one has ever had a case of it and there are no statistics.

 

4-3-03

Thank Mike for his opinion; we value his lifetime of experience.  The research and waiting are torturous.  Last year, we don't remember feeling so down.  We are trying to stop trembling

 

We made an appointment with Dr. Freiberg at Jefferson [Dr. Cassir and Dr. Anastasi suggested him] to find out about the biopsy.  It is for April 24th - which seems the best they could do with scheduling. He is a thoracic surgeon.  Would you consider that the same as a pulmonary dr. 

 

I still hold this little corner in my mind with the thought that maybe the CAT scan interpretation is wrong.  No one else has seen the scan films except the imaging center.   Usually Dr. Cassir asks me to bring them over [or he orders them].  One thing we have noticed is the way the radiologists at A.M.I write up their reports are in the alarmist-mode.  One of our friends, a dr. has this distrustful side from observing a certain imaging center in Phila., and he  thinks that maybe it is to encourage more tests hence more revenue.   Who knows?  We read about all kinds of horrible situations in every industry every day. I try not to think that way.

 

4-4-03

In doing our work for the Foundation, we get letters from people telling us about their shaman 'drs.'  We can't believe the stories they write.  Now we learned first hand so maybe this was good so we can help them more.  It breaks our hearts to read people have drs. that gave them the wrong treatment or the dr. wrote them off or the drs. don't know what to do. We can't believe the stories they write because up to now my care has been flawless.

 

4-5-03

And like you said, last week, a pathologist we know at Jeanes Hospital said she has seen a few cases lately of scans resembling cancer but it turns out to be T.B.  That made us ease up on the trembling a little. I have everyone praying for an infection.  Look what we pray for.  Yikes.

 

4-7-03

Well, thank you and your family for all the good wishes and prayers.  Maybe they worked...somewhat.  I guess it could always be a worse report -  Dr. Brady felt I should have the combo PET/CAT and then a needle biopsy [CT guided] and if it is malignant, then he'd recommend an oncologist at Penn. Meanwhile Dr. Brookes feels I should have the combo PET/CAT and have a lobe of my lung removed.  Maybe within the next 2 months before the tumor doubles and starts interfering with blood vessels, etc.   Major major surgery again. Very horrific.

 

He feels the growths should come out and the lymph nodes involved with it. No one knows much about thymic cancer except the pattern of spread is from where I had it down to the lungs.  He feels it is probably that while Dr. Brady holds out a small hope it could be something else.  So we are confused.  We have 2 appointments with the big thoracic surgeons ---one at Jeff. and one at Penn.   We will go to Fox Chase to see a medical oncologist and maybe one at Penn.   And maybe one at Sloan Kettering.  Then decide based on what they say.

 

 I am learning that it is very hard to enjoy anything with this hanging over. I am frustrated that the future looms with pain and discomfort again.

 

Enjoy every minute.  Anything that is not cancer is a dream. Cancer is so final.  It breaks our hearts to have to deal with this again so soon with no respite. 

 

4-8-03

In all this horror, it is wonderful that you are there to be such a help and great support.  Thank you for knowing your work so well and suggesting the prescription for me.  I took one and already feel much better.  It is a miracle drug and can't thank you enough for helping to get me out of the bad mental trouble I have been in for a week. I've never had my emotions manipulated this way.   Not even last year before or after the surgery or radiation. 

 

This was the straw that was going to do it.  I'll be able to think clearer now and make better decisions.  You ought to write a book ---a step by step primer.  So many people could benefit from your lifetime of expertise in all of these matters.  Dr. Cassir's practice is so lucky to have you.

 

The social worker at the hospital said she is praying it is typical Barbara and something weird [but benign] is going on.  Aren't we all praying for the same.

 

Today, I couldn't think or write, I couldn't talk; Alan has been so outstanding in dealing with the calls coming in.  Me---I'm dropping things, tripping, spazzing out.  Today they prescribed something for my nerves. The word cancer and me in the same sentence is so difficult to deal with this time.  It is frustrating to have to  face this again so soon with no rest. If it were 5 or 10 years from now, I'd expect this

 

What put me over the edge today was the imaging center said they didn't have me down for the PET/CAT.  They said Dr. Cassir canceled it, I was put at the end of the list, and the girl said they closed my file [I got paranoid since he sent me on to Goldberg].  Turned out he DID NOT cancel it. I will probably have it at Fox Chase Cancer because here, the machine is not set up yet.

 

Just this minute, we  heard of a medical oncologist in Pittsburgh that is supposed to be one of the best for my type of cancer.  His name is Dr. Dong Moon Shin at Hillman Cancer Center at Univ. Of Pitts.  I have 2 friends in Pitts. who I am assigning to check out his reputation.

 

4-9-03

Seems I have no appetite and find it very difficult to eat most of the time.  I get that way when I am upset ---can't remember the last time this happened.  Just get very anorexic.  So the only things that even appeal to me have to be sweet, etc.  Last year I said I felt like I was in a Punch and Judy show.  I'd get a little more on my feet, then get a whack down, then try to get up, then get slugged down, etc.   It is actually worse than last year.  You can do it once but a 2nd time is more frightening. 

 

Dr. Shin called this morning and had nothing special to offer except what we have heard over and over.  Find an oncologist and follow a standard regime.  Pretty funny since they don't have a standard regime for thymic. 

 

I know, I know...don't let the bastards grind us down.  Fight - kick -  beat ---we are going to try. If only it could be that easy.  I am very frightened of a chemo regime that is similar to those many of my friends have been on. Have you ever spoken to people suffering on it. It is a living hell. Our friend in Connecticut , Rosalie, for one, with ovarian cancer has been terribly ill.  Her throat was burnt [from the inside], now she has ulcers in our stomach from it, she is on oxygen because the chemo has hurt her lungs, etc.  She is down to 100 pounds.

 

Thank you for the encouraging stories.  We stopped at the herbalist-pharmacist today [the man who went to PCPS ---remember].  We picked up a few items - a special formula  Maitake gold 404 - it works with the immune system and tries to stop vessels [like green tea] from going into tumors.  Beta Glucans.

 

What more can we do.  We even went to kickboxing tonight - it helped clear the mind for 45 minutes

 

4-10-03

I'll let you know about Penn's visit tomorrow.  Thanks for being helpful in telling us details to watch out for . Sheryl from FCCC called and we got it set up for Tuesday at noon .  Maybe the answers this test gives will guide us in the right direction.  Sheryl was very nice and helpful so it seems like it will be a good experience.  It was a relief that she was so nice. After your stories.  We think I can pre-register or am already pre-registered.  I even have one of those 'credit card' looking things.

 

Thank you for the information on the drs. and especially from Ila.  It seems so logical.  If we could do antibiotic testing on Petri dishes decades ago, that seems like the next jump.  Alan has been looking it up on the internet and we will ask each surgeon and oncologist too, if Ila has no luck.  It could be a good tool with something this rare. If it works - from what Alan read, it was a bit controversial depending if you owned the lab that did the testing or not.

 

I suppose there is a divine reason for all of this.  May it become clear one day.

 

4-12-03

The scans showed only the right lung had spots - and the suggestion is to take only the lobe with the spots, not the entire lung. But it will be dependent on Tuesday's upcoming PET scan.

 

Well,  here's the latest------ we had a visit to HUP yesterday with a thoracic surgeon to get another opinion - surgery is scheduled for May 12th.  Larry Kaiser -he said he was out at UCLA before coming East.   He would try not to take the entire lobe but promised more pain than neck surgery last year.  Just can't imagine worst than having your throat slit!  At least he didn't come scrambling in the room saying the CAT scan is bonafide malignancies.  He was very patient in answering all of our questions but as soon as we left and digested everything, we thought of dozens more.  We emailed him and HE ANSWERED so he seems like our type of dr.  We are impressed so far.

 

Now here is a good sign.  John Glick recommended Tracey Evans, an oncologist  [and the best we've met so far] from Dana Farber in Boston .  She has a good approach and is extremely knowledgeable.  She said , what all have said, there is no protocol that they know works for my type of cancer but she is going to research it in the next month. We were impressed; she will be going to a national oncology meeting in Chicago and 'shop' around my case to see what is new or what will work. She'll call her contacts back in Boston .  She gave us a little more hope and a better frame of mind with which to deal with this.  We have had NO luck with oncologists yet.

 

 Tuesday I am going to Fox Chase Cancer Center for the PET/Cat  scan since the local doesn't have it up and running yet.  We are hoping the spots from January are contained and there are no more.  That would be a big problem.   So we pray the lit up areas are the same [a dream would be the are less but I don't have that type of luck].  A lot depends on this test.  If there are more spots it could cancel the surgery.  But if I can get the lobe out, Tracey said I may not need anything more than the surgery, IF the PET scan is good Tuesday. 

 

Here is a question for Mike.  A friend who is a pathologist suggests that we ask if the surgeon will send the excised tissue to a lab that does chemo sensitivity testing to see which drugs actually work on it. They try to grow your cells on media and then try drugs to attack them.     I am not sure how advanced it is or how accurate but have heard that it can eliminate certain drugs so you donít waste time using them.  Tracey is looking into it to see if it is still experimental and how Penn views it. 

 

Being without disease is the most important.  You can take care of the rest, after you feel better,  The lung may repair itself over time since that type of tissue regenerates well.  Do you have trouble breathing?   Take 2 chocolates and call me in the morning.

 

This is all so unreal. We long for normal again.  To answer your question, Johns Hopkins has been one of he only institutions that we can't get any answers from.  It is impossible to find out who there has dealt with thymic cancer.  A friend's son works there and he wasn't even cooperative.  If you have any ideas, we'd love to hear them.  One expert - a Dr. Foriestiere -  has not returned emails, calls, or letters. She may be the only one we ever heard of that saw a case or 2 of thymic, which is a windfall.

 

So we continue to be our own researchers and it is a bit much but who else will look after my outcome but us.  If it were a common cancer, like breast or prostrate, the protocols would be all set up and you just go to a dr.

 

4-13-03

 

We heard from Fox Chase Cancer Center and a 2nd doctor there would like to see me.  One of our friends who has worked on grants said that the extraordinarily rare diseases always seem to spark an interest in scientists and maybe I'll get some attention that way.  She said when they are working with something unusual, they work a little harder.

 

So this is better than last year since no place had anything to offer  then.  Truthfully, we don't know how people can have cancer and work. It is a full time job to be your own advocate. This is the way it goes all day. Appointments to make, insurance to fight and pre-certify and information to glean.  Alan found out that the Mayo clinic did a study on thymic cancer and found cases of this over 75 yrs. and FOUND SEVEN!  This does not bode well.

 

The major problem is no where and  No one knows much about thymic cancer since it is so rare [not even trials by the NIH] .

 

  My friend  Lucille told me tonight she always tries to gain hope with her breast cancer turned into bone cancer by knowing there are people worse off than her.  Good thought but can there be anyone with a worse cancer than  one for which they have NO protocol or tried results. 

 

4-14-03

Still in a deep funk that gets murkier.  

 

We talk to Emily and Adam plus email.  She is the best - last year when I was first diagnosed, she said something we will never forget.  We had only lived her fulltime then for 2 years.  She said, "We'll be your family here at the shore." You have to love people like that.  They have been such a help.  She lives up to her words.

We have learned how wonderful people can be,  this last year. It restores your faith.

 

4-16-03

It has been a very long 24 hours; the scan was at Fox Chase Cancer Center
yesterday [it is so odd -  I  lived minutes from there at one time in our
lives and now it seems so far away]. Everyone involved in my test was
wonderful. They made it as easy as possible for me. The dr. in charge was a
gem.

The PET scan at FCCC went very well, better than I anticipated.   An experience like this does make one more spiritual.   Using every bit of energy I had, I laid in the scanner, in a Zen-like state, concentrating on a protective glow around my body. Using all the energy others were focusing on me at the same time, I willed the errant cells to be dead and out of my body and before I knew it, the tech said I was done [the fastest PET scan I ever had].  The radiologist [Dr. Adler] heard me thanking her and he came in and wanted to know why I thought Fox Chase was so much better.  One thing led to another and he and Alan hit it off with talk of computers [what else] and he wanted to show off his computer instrumentation to Alan. So he was kind enough to send us home with the films so the techs gave us copies of the films so we wouldn't have to drive back up for them another day . We actually brought home the images on a  CD.  But we had no idea what we were looking at. Today we Fed Ex-ed them to  the various members of our team. 

I remember your words from the fall ---polite persuasion, or something like that.  Fortunately, Donna was very sweet before you came but thank you anyway, because they did take pains to make me comfortable and keep me calm throughout.  She seemed impressed of our history together. The experience was much better than we anticipated after hearing your stories and other people's tales.   Even the registration area wasn't too bad except for some misinformation.  They [I know which woman it was, just not her name] said  my yellow card was fine and to go back but when we got there the imaging dept. wanted the red card.  I stayed and Alan went to get the card. Nothing like your visit to Dr. Borass.   But I told my rad. onc.'s office the story and they did as much pre-registration as they possibly could from their end.

 

My radiation oncologist called later today and he said that the news is
better than originally thought and good compared to what the local
oncologist was predicting. The scan shows that 'it'  is contained in the
right lung.  It is a few suspicious lymph nodes [which there is always a
wee, tiny chance that they could be reactive from the massive radiation I
had] and a few spots [one of which has grown].  They assume it is a
metastases but say there also is chance it always could be something else
and just to wait till after the surgery on May 12th and we have pathology.
So he said the same as the surgeon which puts a little glimmer of hope in
the picture.  The last PET showed an axillary node lit up and that did NOT
light up this time.  The abdominal spot is most likely nothing, a few drs.
said after reading the scans. The test is not perfect and has to be used
with other tools.
One of the spots has grown since January.  That is bad.

So we are breathing again. As always thank you for your support and prayers.
Without them, we'd never get to this point.

 

 Yes, we should do a book.  Did we not talk about that before.  I can get Alan to publish it!  Between us and a few other people that have lived this nightmare, we can really do a good job.  Would people buy it?  We'd have to make it NOT depressing or we'd have to have a packet of valium in the back.  You know, how some books come with CD's...well ours will come with drugs so the reader is not too sad.

 

4-17-03

 

This really isn't a time to have  any type of holiday; everything feels as if it is closing in on us.  As we did last year, Passover will have to be passed over.   We can't go up and be at a happy Seder and ruin it for the others. It is not fair to the person who goes to all the work to make it.  We were invited to 3 but just can't handle it.

 

By 5:30 when we got to city hall, a  lot of illegal stuff was going on. We stopped the election until the county clerk came in.   'Someone' tampered with the voting machine. As if no one would notice.  How arrogant! Did I tell you I lost the election.   And especially after Gore and Bush in Florida .

 

  She was already mad because the school board secretary had literature  INSIDE the polls and she shouldn't have. It had all the names on it but mine. That is politicking and ILLEGAL.

 

My immune system is not allowed to deal with this issue at this time.  It is the furthest thing from my mind of subjects to handle these days.   Anyway, we feel like I won the election because now I won't have to deal with meetings [early morning and late nights].

 

4-18-03

 

The prayers all helped make this demon still containable for the time so in that sense everyone played major roles.  I just hope this is the end of it and the lung lobe removal goes ok.

 

I see that keeping the bastard cells in line in my body will be a full time job.  A lot of visualization daily. 

 

Maybe I forgot to tell you that every dr. asks me if I ever smoked because they try to make a link that this could be regular lung cancer.   Of course I never smoked [or touched a cigarette] BUT I tell them my father did ---3 packs a day and in the 50's they had no idea 2nd hand smoke was detrimental to children's lungs.  They probably want to hypothesize that this is 'regular' lung cancer. Cytology will tell.

 

I am hearing bad things on that jerk oncologist I first went to.  People do have to be SOOOO careful with their medical care.  You and I have been lucky in having excellent medical professionals watching over us. But how do you tell, especially older people who are very ill and without an advocate, about things like the  bad stories I have been hearing.  One of the receptionists in the hospital heard 2 drs. talking about him.  He was upset that one of his patients went up to Phila. for treatment with another oncologist.  The quack said "he didn't come to me; the big guys made the money off of him and now when he needs a local oncologist for an emergency visit, so he comes to me."  Alan and I knew there were mercenary reasons behind his plan for me.  Even so far as to use up something old on his shelf...... It was just an instinct but we always trust my instincts.

 

 Another nurse told us she knew of a couple where this oncologist scared a woman with breast cancer so badly, that she and her husband stood in the hall with tears in their eyes.  We sure know that feeling.  The guy ought to be shot - a real life Nazi.

 

People, including drs., say I look too well for what is going on inside of me.  The surgery and radiation left me with constant neck pain, esophagitis, pharyngitis, tracheitis, and Lhermitt's syndrome [spinal nerve damage].  Missing a jugular has been difficult too until the body makes collateral vessels.  But I buy very expensive make up and cover up especially in front of Alan.  He doesn't need the extra worry. As much as I can we try to do normal things, like we used to.  That is my goal. I just hope this is the end of it and the lung lobe removal goes ok.  We hope that between now and May 12th no cells spread anywhere else. 

 

Yes, I am sure the cooking clears your head the way taking a ride clears Alan's.  You need a break from the stress.  And it helps to have a clearer mind so you can make wiser decisions.  I am just learning this - why it exhilarates him - I have been on the bike 4 times and each time I enjoy it more and more [uh oh].  He goes slow [my pre-requisite] and he is in good control so I am not afraid.  Besides, the views are miraculous. 

 

 The same island we have lived on now for almost 4 years, takes on a new look from the bike.  I like to head to the end, the point, and smell the bay and see the docks and harbor across to the next island.  We stop and talk to people we know and it is cleansing.  I said it doesn't get much better than that, the last time we took a ride - so when you say live life,  there it is.  Whatever you love to do, that is what I tell people now...  do it!

 

ashes to ashes

dust to dust

do it today

before you rust.

 

As you say, we do feel blessed to have so much support.  It is touching.  Today we went to see Dr. Cassir.  Alan installed the CD of the PET into his computer.   Everyone was totally impressed with the technology.  You watch my body in 3-D turn on its axis.  

 

 So it got read for about half an hour.  Dr. Cassir was pleased the left armpit did not light up again [damn razor in December] and he also thinks the abdomen is not significant since it is not lit up in the malignant range [a few have said that].   All the nurses came in to see it.   So it got read for about half an hour.  As for the lung's suspicious spots, he says the biopsy will be telling.  He thinks I will do well and told me to go enjoy life.  He viewed all my films on the light boxes and showed us everything in the reports. And the best part, is he'll see me 3 weeks after the surgery.  I am very attached to his care and prefer him to a '_____' and I was going to say I want him to coordinate my care here with Penn, for now.  But I think he agreed without saying in so many words.

 

Also at the election I had a 45 minute chat with my primary, Dr. Anastasi [he came out to vote for me 'to support you'].  He will help Dr. Cassir coordinate for now too. They do the treadmill together each day so 'my team' meets often.

 

And Rich Moses called to give his interpretations tonight of the scan.  Everyone is still holding some hope that it is some weird anomaly. 

 

Like you, everyone wants to see me before the 12th.  It is starting to get me stressed.   We will stay over that night at The Inn at Penn.   We have been so lucky to have so many caring people now in our life that we just met here or old friends like you.  Why would I ever waste a minute on ______ when there is barely time to see the angels we know.

 

I would hope to combine some people so we can get together with more at one time since there aren't enough meals I can eat out in the next 3 weeks to accommodate everyone...maybe you can bring the ova to Alan at the hospital while he is on pins and needles waiting. I'd like some calming beings around him. 

 

We will be up Thursday at Penn for pre-admission testing.  We hope to be done about 4:00 or so, if that fits in.  And Friday we are supposed to come to FCCC to meet Dr. Angstrom.  Just a 2nd opinion, as far as we are concerned. Two drs. recommended an appointment.  Those 2 days will be brutal and we will collapse on the weekend.

 

4-21-03

So we get prepared now to spend a week in Phila.  - separate 'vacations' for Alan and I [he will stay in a hotel and me in the hospital]. Trying to get ready to go up is a chore - I have lists upon lists building up.  We like to print out as much as we need [questions, insurance information and such] because it isn't around the corner to come home and get it.

 

We need to find private duty nurses, etc. A terrible deja vu.  If you know of any let me know.  We feel that it is important during the night to have them. They were invaluable last time.

 

Each day we try to go out.  We take walks or drives, and always have the usual shopping and errands to keep up with. Today we visited a fairly new friend who lives 2 blocks over from us, on the beach. We sat on the deck and it was almost Zen-like, watching the ocean from the dunes. She just finished chemo and radiation herself. Someone I know said I should meet her because she feels so alone in her battle and could use some encouragement.  So we have been emailing - she just returned from FL.  She is very interesting and we have more in common than radiation treatments.

 

  She also is very sweet and  she has a brother who is a huge philanthropist in these parts.  I am hoping she will encourage him to help our foundation.  As we were leaving her house, he was walking up the sidewalk and we met him.    

 

 Earlier in the day I made chocolate fondue on our patio for friends who were down from Huntingdon Valley ...strawberries, ice cream balls, etc.

 

Your emails help more than you could ever know.  You are right about top drs.  Last night my friend told me her niece works at HUP and my dr. operated on Eric Lindross so his hands are capable at least. 

 

Today we were able to go off the island and get a lot of errands done...that had been mounting up.  We needed to get to Kinko's and copy my medical file for our trip to Fox Chase on Friday. And here is something I thought of that may help you.  A friend here that is a singer told me to help her voice she buys Penta water at Bonterra's on Fire Road .  Well, I have been drinking a half cup a day and then my voice did start to improve.  Go figure.  Would it be time for it to heal anyway or is this magic water?  But we bought a lot today.  And brocco sprouts.  MY friend tells me that is so important to fight cancer.  But I can barely get them down. Did I tell you about Steve Chang, a pharmacist [PCPS grad], who is amazing and can help you with your lingering side affects.  He owns Parkway pharmacy in A.C. and Essential Elements on Tilton.  I resisted going to him but he is the most intelligent source you could find to put the right items in your hands.  He is a well-kept secret in these parts.

 

I have to keep busy till the 12th or I'll go nuts.  We'll be cooking for Manna one day over at Temple Beth Israel in Linwood [have you ever done it - it is a wonderful program designed to take food to people that are sick].  And we  volunteered to help out at the Linwood country club for a benefit for the Hebrew Academy golf classic, too. Are you going to the RNS luncheon at the country club?  There are too many activities down here - I never did this much up in PA.

 

4-22-03

We do feel blessed to have so much support.  It is touching.  Your sweet compliments, email and prayers are a tremendous help.     Just knowing that you are there is the greatest. We don't really need anything else now that we can think of [...just if you can help pass the word for Gina so people sign up for the aerobic-thon, we'd all be thrilled].  And please keep next April 18, 2004 open ---we are having a Celebrity-Auction Luncheon at Resorts. Lots of surprises.

 

4-23-03

This new gal Sandy is very interesting.  She gave us her medical
oncologist's name [he is at PA. Hospital which is now joined with Penn -we
did not know that].  Alan found his email address and asked him if he knew
anything about thymic cancer.  He actually answered and said he didn't
really know much [which is what they all say]. BUT---he would be glad to do
some research for us

  We have found the medical community around the country to be so
compassionate, not that they know what to do for me.  But at least they
think and answer.  It is incredible how something so small like that,  can
foster a little bit more hope - it means someone is still looking for a way.

 

4-24-03

This was a totally draining and upsetting week.  Some drs. must have nazi blood.  Today was  disappointing at Jefferson .  First the dr. kept us waiting TWO hours.  After an hour of sitting there in the cold gown [which hurt my still sore neck due to the tight high neckline], I opened the door & looked out. The P.A. said he always runs behind & he'll spend an hour or more with us after he comes in. But he had just gone into another room so we knew he wouldn't be out till 1:00 . I got dressed; I had enough!  Alan asked for the films back and we were going to leave.   I had to be at Penn for pre-op tests.    We said that Blue Cross says a half hour to wait is reasonable but 2 hours is beyond rude.

 

By 12:45 he still wasn't in-no one told us about this poor management system. We were fuming.The P.A. said they DO tell patients to bring a book to read .But no one had said a word to us!  Why don't they just book the appt. an hour later. When he came out of the other room, he asked to look at my films. And then the contradictions began.  He said he WOULD NOT operate on me since the lymph nodes in my chest look suspicious.  He said they are not in the lung with the masses and he wouldn't be able to get everything. So why do surgery, he asked?  Again, we got frightened to death. The first surgeon we saw was much better [at Penn].

 

Unless he said that they cut out part of my sternum; I was about to die on the spot. He'd also remove my thymus gland [THAT IS THE ONLY PART THAT DID NOT LIGHT UP during the pet scans I have had]. So it is probably fine. Now hear this - we looked at the scans and I HAVE NO THYMUS.  Most people our age have none. It recedes and disappears so what is he talking about removing something that isn't there.This thoracic surgeon thinks he wants to talk over my case first with several experts before rendering an opinion to us about what we should do. And he wants a week to research this around the country - we said fine. Then he adds, "But call me if you don't hear from me; It may wind up on the corner of my desk and I'll need nudging."  We need this type of medicine, right?

 

What a day of shuttling between Jefferson for this  opinion  [ we are very confused tonight] and Penn.     We debated, at first, going over to Penn for the pre-admission testing but we kept to the schedule [EKG, blood letting, pulmonary studies - pre op];  then we headed home in rush hour.  And tomorrow morning we have to leave the house at 6:00 A.M. to be at Fox Chase by 8:00 .  Another opinion on treatment after the surgery. Or whatever.

 

4-25-03

But.....Fox Chase, was a surprise - much better than we expected and definitely an improvement over Jeff.  Everything pretty much went on time and the drs. were more considerate adding a speck more of hope.  I had 2 coming in and out [one was a Fellow].  For ex., he said IF my surgeon could get all the suspicious masses out, or debulk, they call it, the tumors as much as possible, I'd have a better chance.  In the meantime, they don't know what to do with me either so they are presenting my file to their tumor board at Fox Chase to see what opinions are rendered. But they batted around another round of radiation after surgery, if necessary, or finding a chemo regime [which is bad news because the types I need are very toxic].   Isn't this like being called into the principal's office? It is reassuring that finally some experts are looking into this rare bird. Maybe that is why I was 'chosen.

 

Oh, and here is a 'Barbie coinkydink'---the examining room they took me into turned out to be my lucky number, number 16.  We had the head honcho there [that has been there a long time, does the commercials and ads, and administratively speaking, is at the top].  Rich arranged this.  He said there are some phase 1 and 2 trials they could try on me, but he'd prefer the standard regimens, depending on my biopsy results of course.  The scan shows that the suspicious spots  are contained in the right lung lobes, but that is for now. Who knows what seeds [if any] they may have sent out that are microscopic. 

 

 After Fox Chase, we met Adam for breakfast [he lives not far from there].  We chose the Mayfair diner that was especially  nostalgic  for our family.  When I was little my mother and father took my sister and I there every Tuesday evening.   We wanted my nephew to feel the ghosts there of his Grandparents that he never met.

 

4-27-03

When we got back yesterday, there was an answering machine message from our new friend Sandy saying if we felt like it to come over and she was ordering Chinese food.  So we did go over and it felt especially good to have such a peaceful dinner after the last 2 days; she was just too good to us.  That was the best medicine.  Her dining room is overlooking the beach and it is like a picnic but you have the protection of course, of the windows and walls. We got lo mein. She has good stories and a great philosophy of life, though she has had her lungs ruined by the chemo. She lit the Sabbath candles and that brought back some memories. 

 

YET ANOTHER GOOD OMEN - THEY ARE FAST AND FURIOUS.  I forgot to tell you that when we were leaving Penn Thursday, I felt arms around me and it turned out it was one of my former student's [Gail] boyfriend [he works at Penn].  He just happened to bump into us; I was freaked out how we met in that hallway at that time.  Of all the people and all the times to walk thru that one hall, there John was when we were there.  Totally amazing.  He also was so good to us that it was touching and we started to feel a lot better after we saw him.  He told me if I have NO diet restrictions after the surgery, he can get me a VIP menu. 

 

When I was at Temple last year, I did not eat at all for ONE whole week; I wasn't allowed - only liquids and Jell-O [blah].  Since they gave me too much coumadin and I was bleeding, they wanted to keep me 'ready for surgery'.  That was the loss of my first 10 pounds.So I shouldn't get excited yet.  Never count your gourmet meals before they are down the gullet. Right?

 

We thought the Somers Point bayfest may have been canceled today due to the weather but by the time we got out of the house at 2:00 , it was only cloudy and we found a parking space.  We took a nice walk along the water, on Bay Ave. smelling all the food stands and looking at the tents with all their wares. The only thing I wanted was funnel cake but the line was way too long. 

 

One of our beach crew was here from Huntingdon Valley [can you believe, the ______s] and they brought down a chocolate cake and invited us over for dessert tonight so we went for a short while.  Their cable and phone were out and you'd have thought it was the end of the world.  They don't know what real trouble is. Right?

 

4-28-02

As always, thank you for your support and concern. And help.  And especially the prayers.  It means the world to us to have help along those lines.  I spoke to my sister's rabbi this morning and he said I have to visualize myself being cradled in God's arms now .

 

Stay well.  Live it up and That is an order.   Keeping positive is so important for everyone's immune system.  It is easier said than done, of course.

 

Each and every institution reminds us that Thymic carcinomas are very rare.  Most drs. have seen NONE and my surgeon at Penn has only seen 1 or 2.  The drs. all tell us there is NOT very much published experience with chemotherapy.

 

 On this lovely weather day, we were stuck in  the whole time, waiting for the surgeon to call.  He emailed us that he'd look at the PET scan and call to answer our multitude of questions.  I did cut a bouquet of tulips, hyacinths, daffy-dills, and some redbud to put on the patio in a vase.

 

We are trying to put food in the freezer now so when I come home from the hospital, we have some good stuff to eat.  So today I made lasagna and some brownies.  We are trying to find someone that would be a big help ---we need someone to make a phone squad to pass the info around when I am in Penn.   Last year it was essential. We have someone who will do the Longport and Ventnor calls.  Nancy or Alan can call one person and in turn that person can contact others to make a few calls each.  It will be impossible for Alan to email and call everyone.

 

We get many emails that say what you did ---about how you know in your heart I will be all better.  Every email that sends support and concern is surely a help. My cheerleaders. Each and every one will be unforgettable.

 

You showed a real understanding of our life when you mentioned about dealing with the day to day problems.  Actually we don't.  There aren't any.  What used to seem important is so meaningless now - life takes on a new perspective.  Compared to health, there are no problems.  People ask, for ex., how is the weather.  What weather. It wouldn't matter ...rain, snow, if it were a beach day.   We are in all day anyway tackling the timetable we have for the next 2 weeks.  We were outside today for a half hour, only as far as the portable phone would allow and couldn't leave the house, waiting for calls from drs.  Today  also were the calls for finding nurses and we have lined them up for the different shifts.  But we taking any extra names in case someone unexpectedly can not make it.

 

You had asked about staying over in Phila.  And you know me so well that you answered exactly how we feel.  EVERYONE we know has offered and it is nice. But we got a driver for last Thurs. and Fri. and that made it much better.  We don't like to stay over really; the one thing that helps me have a better mental outlook during this ordeal is being in my own home, around my own things. It is a comfort compared to a 'functional, cold' hotel without all our own amenities.

Thanks for the offer of help when you come.  We will store it and HOPE we don't need it.  Maybe I am in a state of denial these last few days. But anyway, it is nice to read you are able to help out, if necessary.


 We have been kindly asked but never like to stay at family or friend's overnight and impose.  We have had offers from just about everyone we know but are funny that way.  We do like to stick to our own routine as much as possible because it makes us both feel like things are more normal, more calm and in control.  It would create more anxiety than I need now to have to pack and stay in a strange place.  It is bad enough we will have separate 'vacations' the week of surgery - Alan in a hotel and me in the hospital.

 

4-29-03

Then you asked my opinion of FCCC.  I was told a lot of negative things about it - mainly that the problem with FCCC and the others [like you said...Sloan] is you have to get a lot of opinions.  Each center   tries to push people into the protocols that bring money into the institution we were told, since that is how the organization stays solvent.  We heard [from professionals - doctors, hospital administrators, etc.] that whether it fits the patient or not, the cancer centers put them in a program and their disease is irrelevant.  They have to fill the program with 'bodies.'  Or the institution loses money.  For example, if you don't fill up your biochem class with bodies, you have no class to teach, and soon you don't have a job.

 

We took it as our task to have to learn how to sort out the hype and get quality care.  That meant months of research.  We have thus far had  A VERY POSITIVE EXPERIENCE AT FCCC.  The drs. we saw were exemplary.  They were not like used the car salesmen we expected.

 

An old friend of mine doesn't like Fox Chase.  She found  they don't treat people like patients but are surly to them.  She  went for a dr. visit there [ cancer follow-up] and the registration desk in the lobby has "2 'psychos'"  working there she said.  She took a number, waited, got to the 'psycho' and the lady looked up her appointment on the computer, couldn't find it, told her to go have her dr. call in, and sent her to the end of the line.  My friend called the dr. and he said he put her into the computer; my friend waited, got to the psycho and the exact same thing happened.  After the 3rd time, she said to call up to the dr. she had the appointment with and explain why she was late and being detained.   We found a way of pre-registering so we can avoid that scene.  My friend said the lobby is always mobbed with the sickest people and not enough chairs, for starters.

 

Sloan - is the same, we hear.  But no one up there WILL see me.  Remember last year, no one had any expertise.   No one knows much about thymic cancer since it is so rare.  Our friend's  sister is works at Sloan and she took my records from dept. to dept. and they said no one up there was able to treat thymic cancer.  There are not even trials by the NIH - they are basing the current explanation of my CAT scans on the  pattern of spread ... it is from where I had it before in my neck to down to the lungs.

 

4-30-03

Our emails used to be so light compared to this stuff.

 

 They said if the surgeon thinks from the biopsy report I will need radiation afterwards as opposed to a chemo regimen, I should stay with Dr. Cassir [which was of course music to my ears]. Not that I want to go thru that again, but it is better here than driving 4 hours each day. That impressed us a great deal because we heard how FCCC likes to keep people within their own system [for the bucks].

 

5-2-03

Our lives are nothing like yours these days. It is good you got another
vacation in.   We never expected this so soon.  Our nerves are shot.

 

Oh, that is one BIG way you could be a help.

The date of the Aerobic-THon is July 12th and fast approaching  and I will
be out of it for a while and won't be able to do the reminders that I had
planned to do.   If you could encourage any and all people to get on line
and register for it [they can pay with a charge or send a check].  I was
extremely disappointed and felt let down when I looked at the registration
forms, that NO ONE from the beach had signed up.  This is how people can
help - it is the only thing I can think of and that I want.  There is a
maximum we will be able to have since the fitness center has a set capacity.

 

Yes Sandy told us the good news; it is about time - why waste precious
moments.  Just do it...it is always something that can be undone if it is
wrong.  There isn't much that isn't fixable, right?

 

5-3-03

It seems that as the surgery gets closer, my questions increase in direct proportion.  Luckily this dr. has been so gracious in answering each email we send. 

 

You know how grateful we are that you all are rooting for us every single day.  And we appreciate the prayers, more than we can express.  And also your good wishes for an easy time of it.  Most people have been like you...so amazing.  Then there are others, like ______  who called today and could only talk about the weather and seeing shows. It is if her life depends on it being nice outside so she can do certain activities.  Fine, but there are plenty of things to do inside too.  People don't understand how little importance weather is to someone in my mental state right now since much of what I have to do each day is inside and determining my very existence.  I appreciate going out for a nice walk but if I can't because it is nasty, so what. But her life ends for her if she can't.

 

5-4-03

 

You had your ESP hat on today; we took a little bike ride to the Point...the end of the island [I like to say the end of the earth].  It is only 20 blocks from here. Did I tell you that Longport starts at 11th Avenue .  Many years ago, the ocean ate up the first ten blocks.  Very awesome, the ocean is. We had some errands to do [mailbox, deliver a paper to someone, etc.] so the bike was efficient and beautiful.  Every way you turn your head you see water ---either the bay or the ocean.  Now boats are starting to go out in the water so it gets even more scenic.

 

Then we got out the suitcases; I really didn't want to start that.  It always takes me a while to pack [I hate to forget anything].

 

In between we have a master list of things to do or take for next Monday.
Major was  we have been comparing these chemo sensitivity companies and it
is very confusing.  What they do is grow your tissue from your surgery in a
Petri dish - if they can [30% chance].  Then they add chemo drugs to it.
Seems they get conflicting results since it is done in vitro [a Petri dish]
as opposed to in vivo [in the body].  What drs. seem to say is that if a
drug comes up as resistant, it may not necessarily be so and may be the one
that could be used. And it may work.  But it the drug comes up toxic then
that also may not mean it will kill the malignant cells either.  The drs.
say by following the test, the proper course of treatment may be placed aside and the patient given one that doesn't work and could kill them.  It is a heavy decision whether we have the test or not. And we have to pay for it and it is not a set price;   Though we aren't bound by it but it could bias an oncologist.

ponderously yours,

 

5-5-03

The other afternoon,  we  volunteered to help out at the Linwood country club for a benefit for the Trocki Hebrew Academy golf classic, too.  We handed out lunch to the golfers but got a gift bag, like they got.  It had a Mercedes key ring, a cap, some mints, and a neat highlighter pen.

 

This friend of my sister's called today, Sheryl [the stupid psychologist], and she starts off the conversation with the cheeriest "how are you?" as if we all just won the lottery.  It made me sick.  I knew she was playing some game because Nancy had told her about the surgery [and so did her neighbor Kathi, who we are friendly with].  I said didn't you hear I am going in for major surgery next week and she says, again all cheery with a squeal in her voice, like she is at a wedding, "Mazol TOv."  I said why I you saying that to me - they think the cancer spread.  I got so upset.  She said it is translated good luck. Her voice was obscenely inappropriate and everyone we spoke to today said her choice of Hebrew was too.  I was upset for hours. It doesn't take much these days.  What a giant piece of bovine elimation she is.  Did you ever? Wednesday is OKAY!  It is Thursday they are dragging me to a luncheon.

 We can check tomorrow and be sure the tearoom will be serving on Wed. and if  so we'll meet there. It is so restful and peaceful.  Like going back in time  to a different era.

 You are funny - tea they are now saying, is sooooo good for your immune  system.  And I could care less about my cholesterol anymore - a lot of good  it did to watch it for 35 years!  It pains me to think of all the hot fudge  sundaes and whoppers I DID NOT eat because 'they' promised me the BIG ONE!  No wonder they call it 'practice.' 


5-6-03

Yes, you are right - today was too damp to walk or ride outside.  The chill cut right through you. So we took a ride down the coast, south, to see some of the little beach towns.  We felt like we had to get out of the house ---which we usually never feel. Needless, to say, Alan is not able to concentrate on any writing these days and his newest novel is not far along.

 

We went through Ocean City , then Strathmere which is this skinny strip of land.  On your left is the ocean [no houses] and on your right is one house then the bay.  It is awesome during a storm.  The whole thing can go under water if nature gets furious.  If you can use the map program on the internet, punch up the map and see the route we took.

 

  5-6-03

We are trying to stay positive until the surgeon tells us what he saw [or
took out].  But we  appreciate your vote of confidence and cheerleading
spirit.  The PUSH method sounds wonderful.   The prayers are just what  we
need now.  It has to work...like it did last year.There aren't   words to
express how grateful we are at what may seem like a simple act; it  actually
helps me  to gather my inner strength at this difficult time to know others
are rooting for me too.

Though last year, to say the least, the operation was traumatic and the
whole week long hospital experience became indelibly burned into my brain, I
am working hard to keep upbeat and hope this will  be  better.  But above
all else,  it would be our wish that I don't have to go through this again.
Not having healed from the last year of surgery and  radiation therapy, we
thought I'd get some respite and have time to get back to normal a little
bit.

We took a very brief walk over at Ocean City 's Asbury Avenue sale on
Saturday - we had to get out of the house [it felt like the walls were
closing us in].  Each year it gets worse and worse over there - it was
actually boring. Because there is nothing to buy since most of the stands
sell the SAME crafts [all home made looking - sticks for the lawn, wreaths,
how many does one household need if any].

 

Yes, this is like a war.  Each episode is another battle but I intend to give Death a good kick in the ass.  These invading cells deserve the death penalty for what they have done to me.  I have a good 'cheerleader' up on the Main Line in Philadelphia and she plants this imagery in my mind and I try to carry it out.

******

We know that this last month's news was not what anyone wanted to here, AGAIN. And we thank the many people out there who love us,  for keeping us in your thoughts and prayers.  Your very loud voice may bring us the miracle we need.

 

We'll be out of touch for a while starting this weekend when we go up to PHila.  FOR my May 12th lung surgery.  We are trying to get together a phone squad so  people  will be able to hear what is happening.

For your information , Alan will be staying at The Inn at Penn [3600
Sansom]:
    215-222-0200

The Hospital main number is:

    215-662-4000

        patient info.                    662-3908

Please, please know that you have done so much to help us already through this past year & all we really need now are prayers.  We have everything else that is required.  So you do not have to send anything  but if you feel the urge and can not resist, go to www.thymic.org    and see the various ways to support our Foundation.  

 

For example, the date of the Aerobic-THon is July 12th :  it would cheer me to have Alan print out a lot of registrations.  Better than cards, chocolate or flowers.  Really.

 

This is how people can help - it is the only thing I can think of and that I want. We have everything else. 

 

 We are also really lucky at all the offers of help.  But it will be just prayers and mental support at this point.  We had a ton of chocolate delivered to us this week so if you hear these people say they want to send something, PLEASE say All we are asking people is see the various ways to support our Foundation on line.   And to pass it on to their entire address book

 ******

This week is going too fast. We both had to get haircuts so that was on today's list. And we took a walk along Ventnor Ave. to the bank and Wawa [one of those Icee drinks helped my hoarseness a small degree].

 

A lot of people said what you said about that idiot Sheryl and her comment on Sunday.  Alan said that when you go through something like this, you really can get a look into people's souls and into their heart and see what kind of person they really are. He is so right.  Brilliant.

 

5-7-03

 

As you say, may Monday turn out  to be the proverbial piece of cake.  I hate to get my hopes up too high because then it is further to fall when you are let down and the depression is harder to combat.  I used to be such an optimist.


You had tons of great lines the last year.  I use them for other people and hope it helps them as it helped me.

 

5-8-03

Today we went with one of our dear friends [Allison who is on the oldies
radio here every day ] for a peaceful interlude.  She got reservations  at
a Tearoom in Margate .  Have you been there yet - it is a cool
thing to do, beside being  very very calming and relaxing.  She knew exactly
the right 'medicine ' I needed.   We have been planning to get together for
months; her schedule finally improved.  She went from early mornings to mid
day.  And she promised to  help us with the big Foundation luncheon next
April 18th [like on-air promotions].

 

Among a lot of other annoying comments, ______  had the nerve to say to me, "Well, tell me---ahhh, I don't know how to ask you this and don't take it the wrong way but you haven't given up hope yet, have you. "     He continued [until I got Alan to take over the phone]  with comments like, "I can sense that you need to talk to someone." 

 

There were more comments that you'd just go crazy over. He wanted to take us out for dinner  - I said no [he said 'every condemned man needs a last meal]. 

 

Today we heard two more horror stories about drs. down here.  One lady had some blood tests at Atlantic City Medical Center [the Mainland division] and was told she had a blood cancer [our friend's sister].  She went to an oncologist who repeated them and she is fine. She lived hell for a few weeks.

 

Another fellow saw 5 drs. [which is way too many] here about his ear pain and sudden deafness and they said it was a virus.  He had enough so Wednesday he went up to PENN.  It is not his ears - it is a neurological problem and he was mis-treated and should be fine

 

That is so so sweet of you to offer to bring meals; that won't be necessary, I am sure.  But thank you.    I have 4 weeks of meals in the freezer so I could feed the whole town at this point.   But if we need anything, I will let you know. You won't have to drive to Longport.  There are so many people here - many just came up from FL. to be here when we get back from PENN.  We are really lucky at all the offers of help.  But it will be just prayers and mental support at this point.   All we are asking people is see the various ways to support our Foundation on line.