January 8 to February 22, 2004

 

 

1-8-04

The human body is amazing how much it can endure.  With all the tiny cells and tissues and organs, it is amazing more doesn't go wrong with us.  How it all keeps going after a half century beats me. ANd I taught biology!  We aren't plugged in or carry batteries. SO what's the deal?

 

But when you are told that diagnosis, then you realize that your time here is limited.  We all know that to begin with but don't think about it. And most surely don't do what they really want to do in life.   A friend of mine in CA. understood what we went through when we heard the news 2 years ago. She said she had a dream that she had cancer and it was so real as she was living it in the dream.   That she woke up and carried those fears and other feelings around with her.  It is a deep abyss,  we try to push it somewhere deep most of the time. 

 

We learned many things from this and mostly to do what we went, when we want, and with who we want.  No more Saturday nights with people that are toxic. 

 

1-9-04

 

You have to be commended for making that long journey to Indiana - how many hours was it for you.  Did he concur with your experts in London.  Sometimes when you have been to dozens of appointments locally and have been scanned over and over, you just don't want to see one more dr.  We hear this often from patients or their families tell us this.  For us to go to N.Y. city is a 3 hour drive and that is where Sloan Kettering is.  ANd I haven't given myself the push to go there.  Maybe because I have faith in my local drs. for now.

 

Alan is working feverishly on "Type B" [his 4th novel] now for the luncheon.   Did I tell you that a lady in Canada makes handbags and designed 2 for Brooke Castle [the main character] to carry in the novel.   So Alan is writing them into the novel and we'll auction them off with autographed copies of the book. Is that clever or what?  Did I tell you about this yet. If you want to read funny mysteries, start with TYPE A.   A friend just called and said she was reading one part and laughed so hard she almost fell out of bed. She is in her 70's and has been ill lately. I am so glad she laughed.

 

1-10-04

Speaking of good deeds, Resorts is offering special room rates,  if attendees to the benefit mention the Foundation [Alan put it on the website]. SO if you want accommodations, there is a toll free number to call that he listed. 

 

One thing we noticed is that the ballroom [where the event is] is about 20 feet away from a walkway that takes you indoors to the Trump Taj Mahal.  There are windows that look out onto the ocean and amusement pier. It was breath-taking.  I could camp out there!

 

 We were at Resorts today.  The banquet manager there is extremely helpful so that calmed us down.  She is such a help -she will get us security,  podiums, lots of little things we are figuring we will need.  I am the type of person that plans all the little details so there are no big surprises...and my lists have lists at this point.

 

1-11-04

It would be nice if I could wave a magic wand and make your pain go away.
At least you are seeing the best and he has a plan.

Another celeb is coming.  A medical star this time. We are totally overwhelmed at this point and can't think straight anymore.  Dr. Loehrer, One of our board members,  said he'd be coming to the fundraiser in April.  What a guy.  We are going to present him with an award for his work with thymic cancer.  He is like a giant to us.  He is the key to my life.   ANd he will be the one who suggests where the funds should go for research. I have read so many emails of people that have gone to him and he has become a legend.  Not only does he treat patients from all over the world, but he responds to phone calls and emails from patients and doctors all the time asking for advice.  Many of the patients that have written to the website have seen him. 


Meanwhile the first surgeons I had wrote up my case and it is published this
month - this was the extract that they presented to the Triologic Society
and it will be in the journal "Laryngoscope."  Lucky me!

 

http://www.thymic.org/Barbara.htm

43. A Case Report: Ectopic Thymic Carcinoma
Nicole A. Schrader, MD, Philadelphia, PA
Kai K. Ni, MD, Philadelphia, PA
Daniel J. Kelley, MD, Salisbury, MD

EDUCATIONAL OBJECTIVE: At the conclusion of this presentation, the
participants will have a basic understanding of thymic carcinoma, including
techniques for diagnosis and importance of classification.

OBJECTIVES: This report discusses a case of thymic carcinoma occurring in an
atypical location with a review of the current literature.

STUDY DESIGN: This is a case report.

METHODS: A 56 year old female was referred to our office with a five-month
history of dysphagia and a left-sided 4cm X 4cm neck mass under the
sternocleidomastoid muscle. The initial CAT scan demonstrated a large
heterogeneous mass adjacent to the left thyroid lobe. The patient then
underwent complete excision of the mass and a modified neck dissection.
Cytogenic and immunohistochemical evaluation revealed neoplastic cells
positive for epithelial markers cytokeratin (AE1/AE3) and CD5 molecule.

RESULTS: The histomorphology in conjunction with the immunohistochemical
profile was highly suggestive for poorly differentiated carcinoma of thymic
origin. Thymic carcinoma is a rare neoplasm that usually presents as an anterior
mediastinal mass with aggressive histologic appearance and clinical course.
The classification of thymic epithelial neoplasms, which includes benign and
malignant thymomas and thymic carcinomas, has been a controversial issue in
tumor pathology because of the variety of histomorphologic types. In the
past, thymic carcinoma was often confused with malignant thymoma and
metastatic tumors from other sites because of its heterogeneous histology
and several microscopic subtypes. Recent developments in
immunohistochemistry for cytokeratin and CD5 expression provide greater
accuracy in the diagnosis of thymic cancer.

CONCLUSIONS: Advancement in immunohistochemistry staining proved to be quite
useful in confirming the diagnosis of this rare neoplasm found in an
atypical location.

 

1-13-04

Today, we had a little meeting with Sarah Griffith [a primer on auctions - she is sooo smart].   There are many things we should do in advance to prepare.  I have a headache after all that.  She is the executive director of Gilda's Club and has run these before.  She also will help the day of.  We hope we can coordinate the 60 people who volunteered to help us.  We'd like to hire like a 'wedding planner' that day so we aren't pulled this way and that by a 100 people.  This surely utilized all the education and skills we ever had in past positions.

 

First we went to the cardiologist and it was a check up and my blood pressure upset them for some reason.  They kept taking it [lie down, rest, blah blah]...send in the next higher up on the medical hierarchy.  Thought we'd never get out of there. Then they did an ekg.   And as a parting gift they gave me a copy of the EKG to 'carry with me at all times."  Should I be freaked out or what. 

 

1-14-04

Your neck and voice are a problem I have also had.  My neck has always hurt since the radiation.  It feels like someone has a strap around it and is pulling it tightly.  And at times it feels more swollen than others. Often it is like something is in there and wants OUT.  The voice is always raspy. I can live with both as long as it is benign.  What they tell me is it is scar tissue pressing and not to worry, like you have been told.

 

You asked about the thyroid symptoms - it is awful.  My hair is falling out, my weight is increasing, my cholesterol rose 100 points, I am tired ALL the time, and in general, every system of the body has a symptom. The pill dosage needs adjusting.  As for the thyroid, it kind of regulates our metabolism.  It puts out hormones [chemicals] that keep us going...all of our systems.  So if it puts out too much hormone, you can run yourself ragged, like the Eveready bunny.  If it puts out none or too little, then you are a slug. 

 

SO you asked how many medicines I am on - well, I don't have enough fingers to count.  I am what one dr. calls a "therapeutic anilihist."  That means I reject taking my medicines.  I only take them when I have to - like blood pressure pills [if I take my pressure and it is normal, I don't take the medicine!].  I drive them nuts.  I refuse the statins [like lipitor] to lower my cholesterol.  I only take what I have to and now it is the neurontin and synthroid. Some hormone replacement, an aspirin a day, some prilosec if I have burning, and RX's like that.

 

 

1-15-04

One big coininkydink after another lately ---and of course there is no such thing since Deepak Chopra says there are none.  We enjoyed the potluck supper at Gilda's, I forgot to tell you this, and went upstairs to the Reiki room.  I was the only one in there while Charlie set up.  Another lady strolled in and we started talking. . . her type of cancer, mine, how long, where she is going for treatment.  And as soon as she said N.Y., I said a few people are going there and simultaneously it hit me.  She had to be Sandie Jewell.  ANd it was.  The director of Gilda's told me months ago that there was a member that had trigeminal neuralgia too and she wanted to put us in touch. We spoke on the phone et voila...now we met.

 

Today was another coinky.  I was talking to Alan about Eddie Peck [he used to be on All My Children ---the guy we took the central park carriage ride with].  We wondered if we could find him and get him to come April 18th.  The phone rang 2 hours later and it was HIM CALLING from CA.  Give it to me straight.  What does all this mean.

 

So I am off to get some information.  We got a letter today from the superior court of N.J. that WE ARE BEING SUED.  The letter was addressed to Aloysius Neibauer at our address.  We are to appear in court.  NO WAY!  Now we have to call a lawyer and undo this mess.  It is a credit card fraud.  Someone used our address and last name.  We called the lawyer who sent it and now ordered a credit report.  What a pain.  I am going to send the bills to the lawyer who sent us the erroneous letter. Guess who will have the last laugh.  They will be making some restitution to me for upsetting me but they don't know me or know it  yet! HAHAHAA. Plus the money we have to pay a lawyer is going to be sent to someone too, but they don't know that either yet.

 

 

1-16-04

 

Today Boscov's gave us a great item - 3 Barbie boxes of toys to auction off.  That will be wonderful for someone who has a special little girl in the family. And the woman in charge of Public Relations told us that we can bring any items that need wrapping in there any time.  We just are in awe of people lately...well it has been 2 years now.  What a way to learn a lesson...there are just absolutely the most caring people out there.

 

1-17-04

Just got a slight coating of snow [you can see the grass so that's like no accumulation].  It isn't bad here because we are cozy by the fire and I cooked a brisket today.Oh did that smell good all day. ANd Sunday we'll do a big turkey. 

 

1-19-04

Today WE HEARD  that another star is coming; they all want to join the bandwagon.  It is deliriously exciting. And now we have about 8 experienced Fan Club presidents coming who have ALL bought tickets and volunteered to help out that day.  They run these events all the time and have told us of problem areas to watch out for [and problem people].  I will put them in charge of diffusing those types of problems.

 

1-20-04

The voice problem seems to be something I will have to live with; others don't get it.    Tonight we went to Gilda's Club---a chef was making chicken pot pie.  The first people we saw started asking me how I was and I had no voice [maybe the cold outside aggravated the burnt laryngeal nerve] at that time.  It is quite difficult - they keep saying "what" and I don't want to strain [it hurts].  Awkward. 

 

 Then one of the volunteers came over to me and instead of just being pleasant starts complaining about her depression [she's bored].  Man o' man ---I despise meeting healthy people that have nothing to complain about I think I will have to tell Gilda's to be pickier when choosing volunteers.  I gave her an earful of why I SHOULD be depressed.  She was clueless as to what living with what we are living with is like.

 

Monday are my scans - the healing therapist said to tell everyone to think of me at 9:30 A.M in a soft blue blanket [then I will feel the good vibes all at once]. Can't hurt.

 

  A second letter came Saturday and it had to be signed for.  We refused! IT wasn't addressed to us but to Aloysius Neibauer Had to go to the police in Longport today and file report for this credit card fraud mess.  SO unlike Phila.  When my car was stolen, NO ONE came over.  Within an hour an officer came [it was 'Luke' from Type A - what a weird feeling].  He had already called the credit card company and shyster lawyer on our behalf!.  Something is going on and it isn't good. There could be some scam involved. Obviously. 

 

1-22-04

Then I had to go to Margate police for my new badge for the domestic violence team.  All Police, all the time.

 

And then we went to our friends' house to do a favor for them - unplug something they left in while they went back to Huntingdon Valley - we have a key - and when we left we realized we got locked out of our car and had to get a cab to take us home for another key.

 

1-24-04

Tell Kathy I am sorry to hear about her mother-in-law.  I know this will sound terrible but my favorite gifts were ones where people left me alone. I couldn't talk or eat and just needed to sleep and recoup.  I wanted no company at all.  Breast cancer radiation is less intense with less side affects so if the woman is up to it,  a cooked meal of favorites helps or a dessert.  A neighbor brought ALan dinner 8 weeks in a row. I had no energy to cook.  Some gave us gift certificates to restaurants to use much later.

 

There is always the idea to buy a book on nutrition for cancer patients or one of my favorites was how to relax before any major test [or operation].  Some people dropped off flowers or plants that could go in the garden.  A few made donations to appropriate charities to wish me recovery, etc. Or they put my name on prayer lists that were read in various congregations.   Everyone likes different items - I like meditation tapes [like Deepak Chopra - especially his healing meditation].  That is so wonderful. I may take it to play during my scans Monday.  Let me know if this helps and what she tries.

 

I am all the way with you that God should find some others to test.  We were at Gilda's and heard a poem and one line was repeated over and over..."God doesn't give you what you want - he/she gives you what you need."  SO though we want good health, he is giving us legs and eyes etc. and we are to be grateful for that.  I am trying to understand all this esoteric theory.

 

 

 I got my badge just in time.  And my beeper .  Thursday night  I was called  at midnight.  I was so comfy in my flannel nightshirt but got dressed and off I went.   The young lady just was so lovely and very smart and well brought up, that it was easy to talk to her.   Easier than any of the class situations when we role-played. She had a gash on her face. It is so sad. 20 years old - thank goodness not married and no kids.

 

 Everything she said came out of our handbook.  The cycle of violence, etc.   She had been on the computer and knew what constituted domestic violence - she had described films on Lifetime that sounded like the ones we saw in class. W e sat and talked about an hour.  She then sat with me and 2 police and filed for the temporary restraining order. She didn't need to go to a shelter, which I would arrange.  Whew - I am glad that is over.  At 1:00 A.M. a judge was called and then I left and the police took over. She was from Margate, near the police station.

 

1-25-04

Then we had a shocker - a grant application we sent in a year ago to Abbott Laboratories was approved.  They are donating funds so we can research the clothing problem and come up with something. I still have trouble finding clothes that are comfortable - that is those that do not touch where my surgery was and then the radiation.  The area is so sensitive.  The way I dressed during that period when my neck was raw was way too suggestive.  People really must have thought I was a trollop

 

1-26-04

Well, today was an ordeal and we can't say we got good news.  The scans were a bit painful because they left the needle in my arm for over 2 hours.  They inject the radioactive glucose in my for the first set of scans [and normally they take it out before I go into the scanner.] But since they needed to do separate CT scans with contrast they left the needle in my arm to avoid re-injecting me.  I don't know what have hurt worse.  But that is the least of my problems.

 

While I was in the 2nd set of tests, the radiologist told ALan he looked at them for a preliminary reading and he sees tumor activity.  As much as we wanted to think I'd beat this and get cancer-free, it means we have to learn to be more realistic and not keep setting ourselves up for disappointment.    I know you know just the feeling and the gloom that sets in afterwards.  ANd the uncertainty of what torture they will devise next.  You hope upon hope you can throw away the scorecard and simply live.  This is the 8th time we have been thru this in 2 years with no
breaks. It never gets easier.

 

Tomorrow we have to talk to a few of my drs. - medical and radiation oncologists.  It seems like there are some lymph nodes that have increased in size and brightness and  it chills me to the bone. They don't really know what to do for this. There is no chemo for this type of cancer. I don't feel like writing anymore.  Valium doesn't help this at all. But thanks for trying your best between 10:00 and 11:00.  So many people believed it would work. ...who knows, maybe still a chance.

 

Hope they can make some sense out of this. One good finding was the spots that showed on the clavicle last time had disappeared. 

 

1-27-04

The radiation oncologist that I like from here called this morning.  He says it is time to do something; no one knows what though, because of the unstudied nature of this disease. 

 

On one hand he says to do a treatment - he could radiate the spots but THAT WILL NOT CURE THE CANCER, only vaporize those tumors.  On the other hand he says that the good finding was the spots that showed on the clavicle last time had disappeared.  So go figure.

 

This is why many drs. do not like the  PET scan. But it can catch things earlier if it can be read with a crystal ball. This can age a person real fast, let me tell you.

 

1-28-04

I am not giving up yet; just would like a break between fights...that lasts more than 3 months.   It never gets easier. Can't get a normal cancer where you get time off for 'good behavior' for a few years!  Nope, not me. Merde.

 

I will respect your privacy and not post any of your story on the website or the forum. I certainly understand how you feel.

 

I want you to know, though, how thankful we are that you write and told us Linda's story. It is really so important that we share this type of information. With such a rare cancer the experiences of each patient become so important for all of the others. When Barbara was first diagnosed, she felt so terribly alone. We quickly learned that there were no defined protocols for its treatment. The "specialist" at Sloane Kettering in New York said they would treat her "ad hoc" in a trial and error fashion and local oncologists said they could only give her palliative treatment. 

 

1-29-04

At times I get pretty depressed - as it sinks in, it really does get to me.  We were reading the patient stories [and some of their personal emails] and that upset me even more.  It shows that what my drs. have said is fact.  There is no chemo that works.  Each patient that had chemo had no improvement  or if they did have any, it only lasted between a month and 6 months.  The chemo leaves no quality of life [if you were with Laureann a lot, it becomes apparent].   So without the chemo the tumors grow. With the chemo, they may stop for that time period but you are miserable from the toxic effects on the body. 

 

We need to make a data base up of the statistics. I was helping ALan type in the info. The numbers are increasing each week. I also plan to take the info to my medical and radiation oncologists.

 

1-30-04

Brocco sprouts R' Us. Today I made a super infused minestrone soup with almost a whole carton of sprouts, fresh parsley, potatoes, carrots, green beans, celery, onions, garlic, etc.  I felt pleased that I could stand this long in the kitchen and make this brew.  It is a lot of work.

 

Thank you for visualizing the tumors away.  This is the best - I think Adam tries it too.   This type of support is the key, I am sure, to getting rid of this thing. 

 

1-31-04

Your analogy was great.  Another thymic cancer patient wrote me, " the tumor is just as stubborn as we are.  I  look at it like stomping out a forest fire.  we can stomp out the flames but we can't get to the embers.  how frustrating is that????”

 

We are trying to stay normal, even though inside,  this latest series of scans ripped us apart.  We will go up to Phila. Feb. 9th for  3rd, 4th and 5th opinions. Dr. Evans, the medical oncologist  [who comes from Harvard and Dana Farber Cancer Center - the M.D. Anderson of the North] and the radiation oncologist at Hahneman [to read the actual films themselves].   Dr. Brady is up on everything there is on cancer treatments, many authorities have told me, though just to talk to him, you'd know he is in contact with 'the world.'  He travels each month teaching all over.  We will lick our wounds, get information, decide which road looks most promising and keep putting one foot in front of the other.  We have a job to do - we'll take a deep breath and we will lean on each other as we have.

 

Actually this is WORSE than an orphan disease.  This isn't even listed with the orphan diseases it is so rare.  ON behalf of the Foundation, we tried to get them to add it. They did not list it. The Mayo clinic has had 70 of these cases in 100 years.

 

2-1-04

Sorry I just couldn't talk; my throat has been sore all day and it is hard to swallow so this is not the norm.  We did go out for a walk today since it was balmy but it is when we got home, that I started feeling rotten.   My head is a bit heavy too so I am hoping to stave this off. We will catch up this week.  Who knows; maybe it was because we ate out last night. We went to our favorite Chinese place, Billy Ho's and maybe there was a 'typhoid Mary's in the kitchen.  I try to be so careful.

 

To answer your question, they don't seem to put thymic patients on chemo unless it is inoperable since it is not a preventative - only a shrinker.

 

2-2-04

SO therefore, anything else in life becomes very trivial and meaningless.  I just marvel and take a deep breath if I wake up everyday and can enjoy looking out at the snow on the branches or the ice on marsh as we go over the causeway bridges to Somers Point.  We are both numb to everything else around us; most people can have no concept of this feeling.  We know unless WE ourselves do something to get research, this is fatal. It is not like other cancers where they do trials on drugs or have protocols. April 18th is critical. 

 

I took Zicam - supposedly a miracle spray that stops colds in their tracks. Today I am coughing more than usual but the rest is less.  Since there's basically only one lung, I have to do things much differently than I did before.  Very hard adjustment.

 

2-3-04

First, I need to say that I don't really feel  like I deserve to be called inspirational - no more than any other cancer patient.  Many have endured so much more.  Our last 2 years have shown us the stuff of what people are made.   A very small few, didn't call or communicate with me for almost 2 years after I was diagnosed. They couldn't take my not being with them doing the things we enjoyed together. I am trying to understand and strangers and new friends are more supportive now. But, it serves as a good example that Alan and I are not the only ones suffering. Our friends and family suffer in their own way too.

 

Medicine is  on the cutting edge of finding help for millions of people that have this dread disease which is really made up of hundreds of different factors.  Some of us have the type that there has been no research for, hence the reason our Foundation is so critical.  Like a lot of pioneers we are going to get shot by a lot of Indian arrows. The most important thing to remember is that we are still here fighting the fight.    Many that have emailed the Foundation that have thymic cancer have not been cured, but they have been kept  alive and active.

 

Just trying to gain our equilibrium.  But I am a believer. Cancer hasn't changed that. Actually, it reinforced what I have always believed.  Everything considered, I’m still very lucky, with the greatest treasure being Alan - and the wonderful doctors, nurses, and medical professionals around the country trying to decide the best path for this rarity.

 

 So, I am trying to make the most of each day and live it, as best as I can, to the fullest. Please,  you do the same.

 

2-4-04

I love going to the fitness center because I suppose I equate it with my old self, b.c.  We know someone who goes there begrudgingly, like it is a chore.  When I was laying in the hospital, or around the house recuperating, I only wished I could be there upstairs with the others.  ANd she wanders from room to room, not doing much ---except sitting a lot.

 

2-6-04

Help should be around the corner imminently.  Hopefully the stars are aligned for us and the prayers are working.

 

 

I apologize for being out of touch this week; some bug got me. It started Sunday.    On top of the news from last week,  the last few days I have been coughing non stop so that it hurts. Even my nose bleeds when I cough.  I have to be very careful since  I am immunosurpressed from the treatments. My throat is sore [so talking has been out],  I am coughing like a fiend [and talking gets it started], and now I have a temperature of 100.2.  Since there's basically only one lung, I have to do things much differently than I did before.  Very hard adjustment. So I took the week off from the auction and slept most of the time. Had no choice - skipped even going to Manna to make the meals obviously [didn't want to spread this]. Today Alan took me to the dr. and it turns out it is bronchitis. SO he promptly put me on antibiotics so there's no chance of it becoming pneumonia, let's hope.  Just don't have my energy level up-keep nodding off.

 

Sometimes you feel like your head will explode if you cough one more time.  The antibiotic seems to be working though it is playing havoc with the intestines.

 

2-9-04

We just got back from the drs. visits in Phila.   I am seeing the same drs. regularly now.  It took a while but last year we were able to narrow it down to our most trusted and knowledgeable favorites. Phila. has 5 large medical schools and any one of them would be fine to go to see their experts. It is only a matter of personal preference.  Our drs. have checked around the country too, to see what they can glean on our rarity. And like where you are, they conduct tumor board meetings on rare cases. Exhausted but on a path.

 

The first dr. wants  me re-scanned in a month and a half [gee, most cancer patients get to go every six months or a year...Not only am I not staying at my 3 month intervals, now they are shortening them].  He said if the lymph nodes increase in size, he could radiate those which means a burnt esophagus again. Which means too painful to swallow.  Well you recall that.Can't believe it is a real possibility again. 

 

One spot that keeps showing up has done so for over a year and it is bigger and scans brighter [it is taking up more dye].  The other 2 spots were there before too - near my trachea - they have to be watched because they could cut off my air.

 

The other dr. wants me to have a special Octreotide scan - a three day affair.  If it comes out positive then they can treat one aspect of my masses with a hormone injection. Very complicated technology. Cancer is never just one 'thing' that happens in the cell that can be 'turned off' and then you are cured.  It can be hundreds of processes.  It has never been tried on thymic cancer before but it is less toxic than other therapies. For a start.

 

Decisions, decisions

 

We ate pretty bad today too - on the way up to Philly we stopped at WA-WA for one of their special Oreo Cream donuts.  For lunch - which was very late by the time we finished - we got whoppers at Burger King.  Watch out arteries...here they come.

 

2-10-04

Yes, I decided.  I will have the Octreotide scan Feb. 23, 24 and 25. Yikes.

 

Yesterday when I spoke to you, I was too tired and confused to do more. 

 

2-11-04

Like you, I wonder if it will ever end...or at least give me a respite.  

 

You are so right about drs.  We each have to be our own advocate.  SO often these days, I am having this same conversation with others.  There are some naive people out there that think the dr. is the expert and they should stay out of his turf.

 

2-12-04

MY DAY...BY BARBARA NEIBAUER

 

We took off for N.Y.   today -  a total turnabout compared to above.   Just wanted to write you something nice and unrelated to cancer.  Since the bronchitis is under control,  I am feeling better this week,    Today we had a day that was the total complete opposite of Monday. Different parts of the spectrum.   Today was like a dream and the best - a day in N.Y. city where we trailed Cameron Mathison around.  He invited us up, to go over the April 18th details and did I tell you that Alan manages his website - we are still stunned and kind of floating on air [first we went to ABC where 'The View' and 'All My Children,'  his show, ] are taped.  Cameron Mathison  gave us a great gift yesterday and helped relieve the stress of 'therapy shopping.'  It was a great break from making these life/death decisions - -  -  this process is so exhausting, mentally and physically. 

 

Our plans for this,  were on again off again for weeks and the day before there must have been dozens of calls of more of the same.  But we all pulled it together. It was 6 hours of driving total.

 

While we were waiting for Cameron at ABC, we saw Terri come by so I introduced myself and gave her a packet, we had planned to put in her mail slot.  What a doll she is.  So sweet. We also saw David Canary [of Bonanza fame] in the main entrance.

 

We kept passing stars we know in the hall and he introduced us as his friends and we were in a daze. Then he went to make up and gelled up his hair [we met more stars in there]; from there he picked up his wardrobe items he needed for his talk show taping. He borrows his wardrobe he wears on the show.  We met  the new J.R. in there.  Alan photographed him, like when he gelled up his hair and when  he picked up his wardrobe items .  These photos will go on his website and will go a long way  .  Cameron showed me where the actors’  mail slots are and  we put all the other packets with shore activities in there.  No easy feat since 9-11 [mail is not allowed up beyond the mailroom unless ...]. 

 

 Then it was a 'car' picking him up and ferreting us  to CBS studios where he taped the 'Ali and Jack' show, which we stayed with him backstage and in his green room. It will air Feb. 20th.   It was a makeover - 'Soap Eye for the Regular Guy.'   Cute.  Since we had a lot of catching up to do, he wanted us to stay with him.  And there were more stars from our shows wandering in and out of his room and outside the door. It was a scene. I was in heaven.  Aiden's dressing room was next door and  was on the show with him - what a guy - we talked about chocolate most of the time.   Jay Wilkenson who plays Riley on One Life To Live, also was part of the trio doing the makeover - what a frenzy - like walking INTO the TV set of your favorite shows and paling around with the stars].

 

What hard work for these stars; beside all the food in the green room, they had a box of gifts for each star.  So Cameron handed it to us to take home.  I said that I really didn't want to take all those items [skin and hair products] since some had herbs in them and I could be allergic.  So we just picked out one.  What a generous guy.  Then he got a thank you not from Jack and Ali - [she is married to George Stephanopoulos] - handwritten - and he gave it to us.  ALan will put it on the website.  When you get a chance take a look at Alan's handiwork.

 

www.cameronmathison.net

 

After 2 hours at CBS, we  then to his home on the 23rd floor of a beautiful Trump building, with views of the Statue of Liberty and the Hudson,  where Alan helped him on the computer developing his website and simplifying other components he needed while I played with his 10 month old baby- - -gave his wife a respite].  But it was a Barbie type day...one very good for the immune system.

 

The End.

 

******

Yes, I have written to Elaine too; her time of need is now.  Did you 'meet' her from the forum?  The pet link is something we need to explore some day.  I do know from teaching microbiology,  that birds [which she has a lot of] carry a lot of different types of bacteria.  I am very allergic to cats and dogs - the microscopic dander - and any of these substances can get into the body and change genetic matter, I am wondering.  Viruses can do that, too.  But the substances can be brought into the home on clothes and aggravate anyone with a sensitivity. Who knows.  We hope to find a great mind to sift thru this.

 

2-14-04

We get more upset at not having a breath between issues but then we  lick your wounds, get information, decide which road looks most promising and keep putting one foot in front of the other.  We have a job to do.

 

I suppose this is why we don't go to group sessions;  deep down inside I am probably envious of people that get a year, or 2, or 5 or 10 or more and they can resume some semblance of their former lives. Not that the members would mean to make someone feel that way, but just being around so many that don't have to deal with cancer immediately would be hard for me at this point. The perfect group for us...you ask!  I think the perfect group is not a group at this point but exactly what you are doing.  ALan and I love the break in our lives that going to a 'cafe J' or "Perillo" night brings.  A Reiki or reflexology is better than anything the dr. can order.  It is a time to escape for a while.  That is why we do not engage in groups now - we need to NOT deal with the cancer when we leave the house. In the house, it is so intense with the calls, making appointments, insurance problems, etc. I hope this is some help. 

 

2-15-04

The radiation oncologist is more conservative - he says "oh, maybe it will turn out to be an inflammation [we went thru this last year with my lung...hoping for T.B.].  The medical oncologist states that she thinks it is a metastases and eventually will need treatment.    They say as long as I feel okay why make me sicker and have decreased quality of life.  I don't do well with regular drugs as it is.

 

I am just not as trusting as I used to be - the trigeminal neuralgia incident is only one bad experience I told you about with drs.   I very strongly feel that we have to be in charge of our own health care; we must have an advocate at all times when we undergo surgery or treatments.  We don't feel stressed out anymore.  It was only at the very beginning, when we got the diagnosis and knew nothing about this demon we have.  Now that we have weeded out the drs. and cancer centers, it is calmer.

 

We are partners in the team we created.  We take them [or email them] articles or statistics and the drs. in turn are appreciative to have more information.  I am really seeing 5 drs. right now. Locally I also have a radiation and medical oncologist. And of course my thoracic surgeon keeps an eye on my chest.   Plus there are the 3 drs. that I use as resources - my wonderful primary who lives in our little town, a dear friend who is a radiologist, and another dear friend who is a g.i. dr.    They are all copied on my results.   Then there are some board members of the Foundation that we send my results to get an opinion from time to time.     I survey them all.  And Alan and I make our own decisions based on their suggestions.  They all write the scripts at different times depending who I see; it is not the typical situation. 

 

They talk to each other and usually all agree; but as typically happens a surgeon wants to do an operation, a radiation oncologist wants to radiate and a medical oncologist wants to give chemo.  We just keep getting as many opinions as possible.

 

 2-16-04

Today we felt like we needed a break away from the computer so we took a drive.  We ended up in Cape May, and it only took about 40 minutes.  Even though it was windy and cold, we took a short walk on their 'boardwalk' which is concrete so they call it a promenade.  We found some half price candy ---you  know, I forgot all about going to C.V.S. today to pick up the goods left over from yesterday.

 

Over the years,  I have changed drs. [and dentists] over and over if I have the slightest question about their compassion or ability. And now with this rarity we are even choosier.  We despise sitting and 'testing' new drs. but it has really become necessary - it is life or death.

 

2-17-04

Interesting thought about the drs. saying "you look horrible."  They never have said that to me - yet.  But they say the opposite...about how good I look and then they hit me with the results of my scans [has happened 8 times].  I don't appreciate people telling me over and over how good I look. What are they expecting a corpse ---Jeez, I buy Lancôme and the expensive stuff now and that fixes a lot.

 

2-18-04

Never having dealt with anything remotely like this, all I know is we have to summon every ounce of our every fiber every day just to go forward.   There really are no words in the dictionary; but people we know that have gone thru it understand .  IT takes a lot of putting on a strong face in front of Alan.  Sometimes it hurts beyond words to look at his eyes.

 

Never thought of it as feeling proud.  I don't know what I feel most of the time; it does help to know the other patients find the Foundation beyond helpful.  For all of us, each other's medical file could help the other. Secondly, all the patients correspond back and forth - either about their daily lives or what their current treatment brings.  AND ALL have a sense of humor; isn't that the most surprising coinkydink of all.  Each buoys up the other.  These are incredible people.  One is coming to the luncheon.

 

We have been reviewing all the data from  people with the same type of cancer [they have sent it into the Foundation] - Alan made a data base. What it shows is what my drs. have said is fact.  There is no chemo that works.  Each patient that had chemo had no improvement  or if they did have any, it only lasted between a month and 6 months.  The chemo leaves no quality of life since it is the high doses with in - hospital stays sometimes.   So without the chemo the tumors grow. With the chemo, they may stop for that time period but you are miserable from the toxic effects on the body. We have about 20-some patients whereas a year ago, it was just me.

 

I did go to the gym too every day of my treatment but it was only to tire myself out before I got on the table.  I did not do well with the mask they put on my head and face and bolted to the table.  DO you have that?  SO instead of taking a tranquilizer, we felt it better to go to the gym [it only took 15 minutes since I was pretty weak] and work on the instruments.  How is your skin doing that is the radiated area.

 

Tomorrow morning I start with yet another dr. - a pulmonologist [I have one of everything].  The thoracic surgeon wanted me to have one.  Maybe we can improve my constant cough.

 

2-19-04

It is all excitement in Ventnor, Margate and Longport.  Guess who's in town. And I mean OUR town, Longport.  David Schwimmer is filming a movie here.  He did scenes last week in Margate at the Ross school where they gave us our domestic violence training.  And this week he will be at Ozzies  restaurant - filming. Next week, I hear it's City Hall.   I want to catch up with him to see if he will donate an auction item for April 18th.  This ought to be a good one.  He is using our friend's house on Pelham for the dining room for some Thanksgiving dinner scenes.

 

2-20-04

You said it all when you said we should be young and well again.  We all are facing different challenges with age.  A friend wrote me that to give up,   only  gives the 'enemy within' bragging rights.   The enemy should  know, you don't kill your host, anyway [basic biological principles].

 

 

2-22-04

We haven't caught any of the production yet.  But so many people we know here have seen it...some are extras.   This is funny; I had my domestic violence team meeting the other night.  They are having them in different police stations so we can meet all the officers.  SO that night it was in Ventnor in this very old building that is very Tudor-style looking.  We were on the 2nd floor and I was saying to the lieutenant how I like the chandeliers, etc. and he said the room was a mess. Because a film crew had been in there all afternoon and ate lunch there.

 

Turns out we were breathing in the same air as Schwimmer was breathing out. That is the closest I have gotten to him yet.  But we are on the trail.

 

Today we had a few people help us make the gift bags for April 18th.  We had
items donated by Lever, Bristol Meyers, and other companies to hand out to
each ticket holder.  We did 300 and had no idea how exhausting this would
be.  And heavy. We are out of room to store these things now. Our friend on
Rumson who is in FL. said we could put some in her house.

Now we know we need a truck to get it all up to Resorts on April 17th.  It
is the sane thing to do.Do you know anyone that will have one to rent, by
any chance;  and more importantly, do you know any young guys who would do
the lifting of the boxes?

 

Thank you for your blessings and supportive words.  It means so much to the
both of us.  It keeps us going. People have been wonderful in that regard;
it is about all we need.  Tomorrow starts the 3 day Octreotide scan [at
A.C.M.C. - Mainland].  To answer your questions about who we chose for
drs....... I have been blessed with good drs.  Their research, methodical choices, and their caring natures are not the norm.  My radiation oncologist here is Jorge Cassir [a truly wonderful
man and doctor-he is on our Foundation board].  In Phila., at Hahneman,
there is Luther Brady [if you look him up on the internet, it is
astounding].  My medical oncologist at Penn is Tracey Evans [from Dana
Farber Cancer Center and Harvard]; here we see Dr. Sandra Hollander.   ANd
Dr. Patrick Loehrer in Indiana is the world expert on Thymic carcinoma so we
[or our drs.] have been concurring with him all along.