April 5, 2002 to May 2, 2002

 

4-5-02

It won't be old times again.  We saw the surgeon today and he finally got the biopsy reports back.  It took so long because they had a lot of trouble identifying the type of malignancy they found.  It seems as if I have a very rare cancer; he said one person per continent per year gets it.  Isn't this swell? 

 

 When we are fetuses our bodies  have a lot of tissues that have to differentiate into various structures.  One of these is thymus tissue.  Seems some of my thymus tissue didn't go to the place where the thymus is [behind the sternum] and it stayed for my whole life, in my neck area.  Something triggered it to grow there and thus my tumor.

 

 The problem with all of this is there are no protocols established on how to treat this since not many people have it.  Even the dr. said he has never seen it before and he worked in the most predominant cancer facility before Temple [Sloane Kettering].  He asked the radiologists at Temple how to proceed and they only have had 2 cases.  He called Shore Memorial to compare treatment and they also have had 2-3 cases.

 

  I will probably have radiation at the shore.  To start, I go once a day.  He did say it may be increased to 2 times a day after a while.  None of this makes me feel too good.  He also mentioned that the chemo they would use is so toxic [platinum-based] that he doesn't know if the side affects would be worth it.  It is all experimental.

 

4-6-02

 

Of course the last 2 months have turned our world upside down.

 

But if you know any cancer experts here, we desperately need one.  We just got the biopsy report and it was kind of dismal; the cancer is very rare.  The surgeon said it is Thymic tissue carcinoma. 20 people have it now in the world. .  It seems as if, he said, one person per continent per year gets it. Isn't this swell so there is no protocol for treating it, like they have for breast or prostate cancer.

 
4-8-02

Thank you so much for calling today.  We are overwhelmed and touched by your thoughtfulness.   It is the best gift that people have given me throughout this ordeal.  We have seen the best side of people during this.

 

It may seem like a small thing, but  your information boosted our spirits in a way, words can not describe.  We appreciate all the support and caring people are showing at this time.  I would never have expected such a rallying of concern.

 

 We even have a friend in Canada who teaches psychology to a huge lecture hall holding 300.  During each class, she has been trying an 'experiment' and holding a healing minute for me.  SO I guess all the prayers, and good vibes, and even those cheers at happy hour [that is my cousin in Marina del Reye, CA.] are working.  I am still here

 

  Several people [Alan's Uncle, Don Wittenberg - tell Judy Beagle] have called and asked for my Jewish name so they can say certain prayers at the synagogue.  We are so touched by everything that everyone is doing.  We couldn't believe it when Don called; we were in his wedding.  His wife Louellen died of leukemia and he gave us a lot of advice. Things must be bad if we are hearing from people from the past.  Another friend called yesterday that I haven't spoken to in 34 years.  

 

If you can find out anything from Michael Haut or your parents,  you know how grateful we would be. It doesn't even matter what their specialty is, ask them "What they would do if their child or mother got ectopic thymic tissue carcinoma."  Then that gets the wheels moving and they may think of who we should see.  Or they'll ask in their medical practice.  We are at a loss.  Our dr. is at a loss.  He can not answer my questions.

 

For now, I am just too devastated to even feel motivated to go on and trek around.  I am very tired and mentally, I feel like my brain was put out on Friday.  Alan, of course, has the energy to want to find the best. 

 

I feel so bad for Alan; I can't even talk on the phone and help him with the multitude of calls.  He is just amazing at how he keeps plugging away looking for experts. There are no words for him.   YES there are: THE WONDER OF YOU.

 

You asked if I heard from ___.  Her last email was nice; others she sent, and her phone calls, have upset me. When I can talk......     ___has sent jokes and I told him a while ago, not to, so I had to write him that since my recuperation is slow, I can not keep my head up for long and often I doze off.  SO when I do sit down at the computer, I know I only have a limited time to answer email.  I  told him TWICE to please do  not send jokes or those non-personal long  letters. I delete them without reading them but that takes up valuable time when I could be answering emails. I had to tell a few people this ---there really isn't much to laugh about these days.

 

Looking forward to hearing from you.  I enjoy your emails, too.  Tell Jerry congratulations about his meat department promotion. Tell him not to fondle the pig knuckles.  It is good when you two get home from work and enjoy the river.  That was a great move.

 

sorry for ranting,

 

Barbara

 

4-10-02

 

 Everyone has been amazing in their research but somehow you are at the head of the class.  Alan is reading all this information now and will contact him.  It seems unbelievable that someone in the middle of the country has seen so many.  If this is so, then our drs. will want to talk to him, too.  We will keep you informed.

 

thank you for your offer to do errands on the way down this weekend.  We are fine in that regard; you really pitched in and helped where we needed it.   For now, I am just too exhausted trying to get over the surgery and then I got devastated to even feel motivated to go on and trek around the internet.  

 

Thanks for reminding Alan to take care of himself.   He gave us a bit of a scare.  He needed an abdominal CAT scan and x-ray today [and the primary just called; they are negative ---a word we haven't heard in a while].  It was such a relief.  He had a pain in his side [actually for 15 years, off and on, since our black belt days when he got hurt].  It had worsened.  Next he will have a bone scan to hopefully confirm it is a hairline crack in the rib.  But we are relieved for now.

 

This illness has us just recognizing that we know it is just the beginning so that is even more depressing.  These constant drs. visits are tiring.  We had to see the vascular surgeon yesterday [that is why I wasn't able to answer] who managed my blood clot and gave me anti-coag.  Had to get an ultrasound - the clot is still there. We also saw the head-neck resident and she said tomorrow they are bringing my rare case before the tumor board to see if there is any thing they can come up with. 

 

The resident  also gave me a script for PT.  Some special techniques may be needed to get my left arm back in working order.  Between the lymph nodes they took out and the clot and the muscle he removed next to the mass, the left arm is in need of special help. And I can't hurt it or get it infected.  Like breast cancer patients.

 

We may take you up on that walk this weekend.  Our oldest friends are coming down for the weekend and staying at the Moses condo.  The Moses offered it so people would not stay with us and hinder my recuperation.  This way they can walk over, sit 10 minutes [my upper limit] and then go about their weekend.  We hope.  If they 'need company' for dinner or anything and you are free, it would be a nice 'marriage.'

 

I felt bad about people driving 3-4 hours total to  see me 10 minutes.  And already I am getting the sense that this couple thinks they are here to 'vacation' so we will have our hands full at NOT seeing them.  I have been upset all week over how to handle too much visitation .  They say they understand and blah blah but want to be here to be a comfort to me.  At this point, 3 days of them is not a comfort but much stress because I can't concentrate on what I need to - to be comfortable for my incision [I have to sit certain ways and be half undressed for it not to hurt] and the multitude of side affects.   They want to eat 3 meals a day out; I am not ready for restaurants out yet.  And it goes on.

  

So if you are ready to 'party' with some new folks, I guarantee they are nice.  And very interesting.

 

love, Barbara

 

Thanks for your reply. We agree...from what we gather, Dr. Cassir at Shore Memorial is well suited for us. Even Dr. Anastasi (our primary) sends his own mother to Dr. Cassir for treatment.  We have an appointment for next week.

 

A friend of ours is an oncologist at UCLA. He discussed the pathology report with others, and they agree that radiation is the best step.

 

We're doing a rather thorough literature search and will get some articles from inter-library loan. Would you want copies of any related articles that we find?

 

Did you every learn of the outcome of patients with similar conditions treated at Temple (would this include Fox Chase since it is affiliated with Temple )?

 

Alan and Barbara Neibauer

 

4-11-02

 

Thanks for going thru the book.  What is MGN-3 and how is it administered.
And where.

If it is not specific to ectopic thymic tissue gone wild, we're gonna have
to go with what our doctor recommends since we can't do nothing.   I am
staying away from chemo, so far.  I have an appointment with the radiation
oncologist here next week.

I have seen a holistic pharmacist [who went to PCPS in the '70's]; he's a
big secret down here.  A wonderful man.  He gave me immune system boosters
for before surgery and for recuperation, but he and other drs. cautioned me
that certain natural herbs and vitamins can feed the cancer cells.

Damned if you do and damned if you don't. Alan has been tireless [putting in
18 hour days - the computer, fax, phone] at searching the world for an
expert or at least someone that can give a prognosis.  The literature is not
positive which upsets us when we read it so we are going to pack it in since
tomorrow is a week.

Love,
Barbara

 

Your father had some very interesting and positive information. While he has not encountered the type of cancer I have, he says that thymic cancers in general are very susceptible to radiation so there is a good chance that radiation can kill the malignant thymic tissues that may still be present. It was a very positive thing, that followed your own positive words and energy.

 

The surgeon said we could search for 6 months and won't turn up anything since it is so rare.  But we HAVE to try anyway. And people are helping us. They say, like you said,  I have to fight and can't give up.

For example, My sister called before - we had a neighbor in
Mayfair , when we were growing up - a Nancy , too.  She married Mark whose sister is Ellen [Ellen and I were very good friends and in the same med tech program at Temple ]. Ellen's husband is an oncologist at UCLA [started here at HUP] and he wants us to fax the biopsy to him... Isn't this nice.  It is now faxed and we have at least, another source.  People are just bowling us over.

Ann, from our beach group,  called and said her son's future father-in-law is a dr. at Johns Hopkins so we pray he can find us an expert in this awful field.  Our friends here, Adam and Emily are making some local contacts for us so we have liaisons here.

And my friend Miriam was watching 60 minutes tonight and saw something about monoclonal antibodies being used for hard to treat brain tumors.  She wanted to know if this could work for mine so she is doing the internet search for us tonight [Alan is exhausted] and emailing us the findings.  She already sent over 4 sites that we will call tomorrow.

This really shows the best side of people. There are so many things that can help that don't cost money.  Hope is a great gift.  Support is a great gift.  It all helps.

Here is a little twist. I don't know anymore if my mother had the same thing.  It seems so rare and from the miniscule amount written on it, I don't see any genetic link.  My sister did tell me something interesting.


When I was a fetus, my mother was in Arizona with my father [in the service].  That is right next door to new Mexico where they were doing all the nuclear testing.  Of course, we know the radiation does NOT stay just over N.M. so do you think it came into AZ and triggered something  in this little fetus.

 

  I am in a weird place these days and analyzing a lot of my life.     If I look back at my job career, I remember days like you had.  I have come to the conclusion that they didn't pay us  teachers enough to run us ragged; the stress it creates makes a bad environment in the body and leaves it open for horrible disease to take over.  Stress compromises the immune system, I am reading.  Maybe, and I know it is hard, take it easier and slow down.  Or can you hire an assistant there to do a lot of the small stuff. It is worth the price. The havoc created on the body is not worth the price paid in the long run. I used to do everything they wanted and then some, at the expense of my health.  You don't realize what you do to the body until too late. 

 

4-12-02

 

The other night a friend called us that we haven't spoken to in who knows
how long.  We were in his wedding and his wife died of leukemia about 8
years ago.  it sounds weird and it may be my delirium but I have thought of
her often during all this [and really ---all the time before this, she'd
come to mind]. It was no surprise when he called, I told Alan afterwards.
It was just a feeling that [I can't verbalize] somehow she guided that call
to me.

Alan is starting to order whole articles now when we can find them.  We just
read an medical journal article that said since 1901 , only 90 cases have
been reported of the benign version of my rarity.  Ectopic thymic tissue
carcinoma.  One article said that lots of people have ectopic tissues in all
kinds of places.  But something triggered mine to grow there in my neck and
thus my tennis-ball sized tumor.  Worse yet, it is malignant.  Most cases
described in the literature are not malignant. That also makes mine what
they are calling, "extraordinarily rare. " It is a hard concept to grasp,
given all the billions of people on the earth.

There is an organization of Rare Diseases and we called; my cancer is not on
their list. Alan spoke to a dr. at Yale today; he had one case - a 26 year
old from Spain but she went home and he doesn't know how she fared.

We have gotten  calls and notes from the Mayo Clinic,  Johns Hopkins, Fox
Chase Cancer Center
, and other highly regarded institutions in this country
and around the world, and even their experts said they have seen thymic
tumors but not ECTOPIC thymic tissue tumors that are malignant. Our surgeon
said when we look it up 6 months from now, we'll be reading about me.  I
didn't want this 15 minutes of fame.

The consensus from all the 2nd and 3rd, etc. opinions is about 98% say
radiation.  So now we need to be sure there is a consensus on dosage and
type and where and how long.  It is falling in place.  We need now to make a
list of all the RIGHT questions to ask the radiation oncologist. Any ideas -
you are good at that.

We are being inundated with information and appreciate it so much.

 

4-12-02

 

I am sure your hair to you, is like my neck scar to me.  It is something that is at the bottom of the heap.  People look at my neck and the slash and say [well meaning], oh, it looks like it will heal and not show.  I could care less if it shows or not.  As long as I am here with a neck, I don't care if I look like O.J. got at me.  I need to just live.  So many things are unimportant anymore.

 

 And I don't know about you, but my tolerance for other people and their insignificant little worries is getting to me.  Like I keep getting email from someone who is tired from her sinus infection.  I finally wrote her that at least there are 100's of cures for that from her pharmacy or dr.

 

We found a pathologist at Ohio State Medical Center who wanted to read my slides so we fedexed them yesterday and he just faxed us his report; he concurs with Temple .  SO that is a relief.  Some experts were saying we needed a 2nd reading to be sure it was correct and not lymphoma.  This pathologist wants some tissue to run other tests. He sees a link between Epstein-Barr and thymic tissue. 

 

I have a good story for you.  It is similar to your 'first oncologist' story where she was second guessing your surgeon's choice.  Someone wrote me that I should have a second surgery to remove my thyroid and thymus.  It was indicated in the pathology report, they said.  I was indignant for you when you told me your story but I know exactly how you felt that day,now.  Exactly.

 

If only I could start talking, then it would not be so much like I am a shut-in, at this point.  After 2 sentences, the vocal cords shut down.

 

4-14-02

 

We are passing over Passover here this year; I am lucky I eat what I eat, at this point.  I lost 10-12 pounds already.  There was no time to shop and prepare and now there is no energy to be able.   Matzo wouldn't go down anyway, considering the irritated throat I have.

 

 

Dear Dr. Kelley:

 

You are getting a lot of compliments about my surgery..now that the graffiti artist purple is going away. Our GP, Dr. Anastasi, was very impressed by how well my neck looks, for example, compared to neck dissections he witnessed when training.

 

Because of the rarity of my diagnosis, we sent the slides to a second pathologist -- Dr. Saul Suster, Director of Anatomic Pathology, Ohio State University Medical Center .  Dr. Suster concurs with Dr. Lin's report, and has added some other details. We will fax you a copy of that pathology report for the record.  Dr. Suster, however, says that this type of carcinoma seems to frequently be connected to the Epstein Barr Virus, and he suggests that a sample of the mass be tested for the virus.

 

Since this is so extraordinarily rare, are all the tissues removed from me, going to be saved, in case more tests are suggested?

 

Thank you.

 

Barbara Neibauer

 

4-14-02

 

The week was consumed with trying to get information on what THEY are NOW
calling my cancer as "EXTRAORDINARILY RARE."  So all our time went to calls
and emails to institutions.

Joan's name was a dead end, literally. It is a shame - she meant well.  Her
dr. was so misinformed because he did not know about my type of cancer - it
got my hopes up and then I was so let down.  He gave a name at the Mayo
Clinic who was supposed to be an expert in ectopic thymic tissue carcinoma
[it took us a day to find the dr.'s phone number and a day for him to
answer].  He told us he HAS NEVER SEEN IN HIS PROFESSIONAL CAREER a case of my cancer.  NOT ONE.   And no one has at the Mayo Clinic.  Or at Fox Chase
Cancer or at Sloan Kettering or at Moffitt Cancer Center in Florida or at J.
Hopkins.  And I could go on.

At Sloan Kettering they want to see me ------to experiment on.  Their exact
words, "We'll do something ad hoc."  That - I do not like the tone of.   It
means they will make it up as they go along.

So we need you to keep at your contacts.  I feel like this is a catastrophic
situation.  Someone must know about it.  We have to find that person.

 We haven't been able to find or contact anyone with the same tumor yet.
[I am not keeping a 'journal' but we have file folders of tests, notes, and
some other papers.] 

 

You asked about my strength.  And if I got out. I overdid it.  It was a
tough weekend. FIRST!   The call from Ann's put the biggest smile on both
our faces.  That was the nicest thing people could do.  The perfect gift.
It was wonderful watching Alan talk from person to person.  Thank everyone
for us.  You all are great and true understanding friends.  You all know how
to be so  compassionate.  The Kaufman's came down for the weekend and stayed
at the Moses condo.  The Moses are very sweet and offered it so people would
not stay with us [oh, yeah - sure!] and hinder my recuperation.  This way
they can walk over, sit 10 minutes [my upper limit] and then go about their
weekend.  We had hoped.

 I am not ready for restaurants out yet. I choke a lot. But we did go to Billy Ho's with them last night - the Welsh's came too.  This morning we went to Smitty's - the Bassman's came too.  It was fine since I can't talk. But it was too much being out.

 Wasn't that some story about the Sweig's.  I am glad to have my Seal of
Solomon back.  I bought it when Adam was at the University of Delaware and
we met him for dinner.  We found a store that sold things like that.  I only
had it a very short time and lent it to Elaine.  I had wanted it back and
didn't know how to go about it. It goes back to biblical times.  Alan and
Harvey didn't say much; just a few words. Elaine's note wished me luck.

 

I don't know when radiation starts ---I have to heal at my incision INSIDE
AND OUT first or I could be in big trouble.  We see the radiation oncologist
this week [and a 2nd opinion at Hahneman next week].  And a medical
oncologist this week.  I can't stand this.  I was at the primary on Friday
for lots of problems with my blood pressure and pulse and side affects [too
disgusting to go into]. How life changes quickly.

 

4-15-02

 

These tokens of hope are a great boon during this time.  Every thing helps. You just wouldn't believe it what happens when we open a card or email.  It is just too scary how a few months ago, we didn't have to think to enjoy each little thing and now  we have to concentrate on just that to get thru each minute of each day.

 Yesterday, 5 couples we know went out to dinner in Cherry Hill and went back to one of their homes.  They called us from there, and each person got on the phone to talk to Alan.  It was a super moment.

 

 My nutritional goals USED to be those that would make me avoid the 'big one' ---that heart attack the drs. threatened me with for decades so I ate 'cardboard.'   Now that something else got me, I want my food to be delicious so I'll enjoy it.  Because I am not sure what my future is.  It is like I fell 'off the wagon.  One of my favorite foods out is South End Pizza [which we had this week]  and the Appleby's Oriental Salad.  I bet it has a bit of fat in it but the taste hooked me in.  And there were a lot of cabbages in it [which I never ate before but they camouflage it so well].

 

We are leaving no stone unturned to find out about this remote cancer. Though the research is exhausting us.  18 hour days on the computer and fax and phone and not getting answers is tough.

 

 I have been pushing myself a bit and am paying for it somewhat tonight.  The Kaufman's came  Friday, they sat here on our patio a while [20 minutes, till I tired] and then they went to the condo.  When I revived, we went to Two Cents Plain - I really felt guilty just letting them  see me 10 minutes.  I KNEW this would happen. Saturday we went to Surfside casual with them [I sat in the car most of the time], Billy Ho's for dinner. The sitting isn't as bad as having to talk.  I still can't and it hurts; people say don't talk, I'll talk for you but then they ask me questions. Nodding my head hurts my neck so that is out. And most questions are not yes-no.


I'd appreciate it if you don't send me jokes.  I can not keep my head up for long and often I doze off.  SO when I do sit down at the computer, I know I only have a limited time to read and answer email.   Twenty people sent me those non-personal long  letters. I delete them without reading them but that takes up valuable time when I could be answering emails. 

 

4-15-02

 

Thanks for helping today with the fiasco.  That was some mix-up in the
office there today; we have used drs. in the past that are the greatest but
their office staff leaves a lot to be desired.  But they finally called back
and agreed to give me an appointment tomorrow with Julie.

Alan and I both kind of lost it over this when we were on the phone with
Bonnie.  We couldn't believe I endured a 9 hour surgery and the bleakest
pathology diagnosis, only to have to put up with her double talk.  That one
needs to be taught how to talk with some compassion to cancer patients.

You weren't the only ones that recommended Julie; we have a long list of
people, including several physicians and our Mayor.  So we will let you know
what happens tomorrow.  We have the highest of hopes.

Barbara

From: <
Eaweiss@aol.com>
To: <
alann@att.net>
Sent: Friday, April 12, 2002 8:38 PM
Subject: julie childs

> julie sent me back an email--i told her that you have an appointment  already--she is so gracious--you will really like her--mention our name when  you visit so she knows that you are our friends--emily

She doesn't remember ever having radiation as a child, although her mother was carrying her in Arizona , close to the New Mexican border when the atomic bombs were being tested (1945).  Her father was a heavy smoker, so she was exposed to three packs a day for 21 years. He was a dry cleaner and the house always smelled from cleaning fluids. Barbara was a medical technologist (MT ASCP) and was exposed to chemicals (she probably inhaled her share of benzene rings and formaldehyde).

 

Thanks for the advice! It is greatly appreciated. I'll fax you a copy of the pathology reports FYI.

 

Sincerely,

 

Alan Neibauer

www.neibauer.net

 

 From: rkomaki@mail.mdanderson.org

Sure, I am interested in to review the pathology. Did she have any radiation
around her neck or chest when she was a baby or kid?
You have to ask how they can reduce rate of her esophagitis which is most likely
occur because of the location of radiotherapy?
Make sure they will give RT to the supraclavicular nodes as well.
RK

Dear Dr.
Koamki:

Thank you very much for your response. It was very heartening to hear that you
would agree with Dr. Kelley's recommendation of RT post op.  We have an
appointment with a local radiologist this week, who has had his training at
Sloane Kettering.  Because of the rarity of Barbara's condition, would you have
any suggested questions that we can ask the radiologist, or any issues that we
should raise?

Also, for your own information, would you be interested in seeing the pathology
reports? Thank you again.

  From: rkomaki@mail.mdanderson.org
  To: Alan Neibauer
  Sent: Monday, April 15, 2002 6:45 PM
  Subject: Re: ectopic cervical thymic tissue carcinoma

  Dear Mr. Neibauer;
  Dr, Kelly is correct in regards to no protocol for this type of cancer because
  of rarity .
  We could draw some conclusion from thymic carcinoma which has been treated by
  chemo followed by surgery and post op radiotherapy if the thymic cancer was
  infiltrating through the capsule.
  The role of chemotherapy for post-operative setting is unknown.
  I recommend post op RT rather than CT at present time.
  Ritsuko Koamki,M.D.

  Ritsuko Komaki,M.D. FACR
  Professor of Radiation Oncology
  Gloria Lupton Tennison Endowed Chair for Lung Cancer Research
  U.T. M.D. Anderson Cancer Center
  Phone; 713-792-3420
  Fax;   713-794-5573
  e-mail rkomaki@mdanderson.org

   To:      Ritsuko R. Komaki/MDACC@MDACC

  Dear Dr. Komaki:

  I've been married to the most wonderful woman for 35 years. We've shared a
life   together, and we are as much in love today as the day I was lucky enough to
  marry her.

  A few months ago, my wife's (Barbara) GYN felt a lump in her neck. She didn't
do   anything about it for awhile but when she had trouble swallowing she went to
our   family doctor. The family MD sent her for some tests that showed that her
  esophagus was being bent by something, and he sent her for an endoscope. They
  realized that it was not in her throat but outside of it, and sent her to an ENT
  cancer surgeon at Temple . They did some biopsies and found that it was
  malignant.  They didn't know the source of the mass but called it a "poorly
  differentiated carcinoma".

  On March 19 Barbara had a 9 hour surgery in which they took out a mass, one
  internal jugular, some muscle and lymph nodes.  She had some complications
with   blood clots and bleeding, and was in the hospital for a week.  She's
  home now and can rest for a few weeks before starting radiation.

  The results of the tests on the mass just came back.  The pathologist (Dr. Fan
  Lin) said that it is   "most likely" thymic origin from ectopic cervical thymic tissue. We sent the   slides to Dr. Saul Suster, Director of Anatomic and Surgical Pathology at Ohio
  State University Medical Center
, who concurs with those findings that it is
from   embryonic or ectopic thymic remnants. Dr. Kelley (the ENT surgeon) said that
  this is rare and that there is no set protocol for treatment yet. He is
  recommending radiation, and said that the literature is unclear about the
  benefit of chemotherapy.

  Are you familiar with this type of cancer? We need some guidance regarding
  treatment.

  Thank you

  Alan Neibauer

4-17-02

Life here is tough; it is bad enough to try to recover from surgery but dealing with cancer is a mental anguish.  I feel like I am in puppet show.  Like where Punch keeps getting hit with the bat by Judy. And tries to get up and then gets punched down again.  I was trying to pull myself up again after the first biopsy report and then after the surgery...... then another punch came along with the biopsy report.  And now - after trying to recover from that -

 

Yesterday we met the oncologist and she totally depressed me.  I was just starting to bounce my spirits up AGAIN [after the biopsy news] and she says she wants to combine AT THE SAME TIME, chemo and radiation.  I am so against this FOR  many reasons.  All the drs. we wrote to at the major institutions [that saw my pathology report] say surgery and radiation.  It is unsure of if chemo will help this type of cancer.  I can't imagine having side affects from both treatments together; it would kill me.  It would be cisplatin [a heavy metal with platinum that can destroy your kidneys].  The literature is so up in the air about all this for head-neck cancer

 

I really do NOT want chemo; it is the only thing I will not do. It scares the hell out of me; what we read is not good when both are done together.  SO it is major decision time; no matter what I choose, there will always be mental agonizing if it was correct. 

 

______couldn't understand how I felt inside... because I looked good, she said, over and over.  It's nice to be told ONCE, you look good, but then she extrapolated that I feel good. I had gotten the sense from her email that they were here to 'vacation'.    We  had our hands full at NOT seeing them.  I had been upset all week over how to handle too much visitation .  I really wasn't ready.


 I won' t repeat these mistakes.

 

4-18-02

 

Hi Rich

  

Dr. Kelley talked with a radiologist down here (Dr. Cassir, who trained at Sloane) and they think it is important that she start right away.  So these last few days have been spent mostly in doctors offices. She saw an oncologist who suggested that she consider chemotherapy in addition to radiation. From what we've been told (from people like Dr. Kelley), the use of chemo on cases like Barbara's is not really indicated, so Barbara has opted to do radiation alone. She doesn't think she's up to both -- with the stronger side effects.

 

She saw Dr. Cassir yesterday (Wednesday) and he wants her to start treatments in Monday. So she went today for some scans and for them to setup her treatments -- tattoo markers and get everything ready. She has Friday and the weekend off, and then starts Monday. It is all going so fast, but she also wants to get started to make sure any "leftovers" are taken care of.

 

The radiologists said that having chemo at the same time is up to her. He said that it is a more aggressive treatment but there is no real proof cisplatin (that the oncologist recommended) would help. Barbara selected the more conservative route, and the radiologist feels it is okay after reviewing her PET scans and surgery. 

 

She's a remarkable person, and still has her sense of humor. She's trying to keep up her energy and not think too much about the road ahead.

 

Alan

 

4-19-02

 As far as Flo's recommendation at Sloan, we don't have the luxury of time anymore.  The drs. say they need me to start the next step now.  If any cancer cells were left, they don't want them to start proliferating.  It is frightening as hell.  The surgery healing time took a while and they want me to do adjuvant therapy of some kind.  At once. It will be 7 weeks of radiations, starting Monday.

 

SO it is major decision time; no matter what I choose, there will always be mental agonizing if it was correct.

Someone wrote Alan tonight from a major cancer center and said that would be trying to overtreat me. The oncologist, though, tried to scare me [like a sales pitch, I felt].

I decided not to have a local oncologist; I don't need it for now.  We saw the radiation oncologist this week also and he mentioned the chemo but said it was my choice since there is no real proof cisplatin would help.  It is only some drs. are more aggressive than others; some are more conservative.

He explained most of the side affects JUST FROM THE RADIATION and some could happen down the road.  Several years. It is not pleasant.  Since the area near my sternum will be radiated [the thymus] and that is near my breast...fill in the blank. This is like a horror movie.  Yes, I could end up with breast cancer from this.

Also, the thyroid could stop working and I'd have to go on medicine to regulate my metabolism.  And the carotid could narrow [remember I already have one that is 50% occluded] and that would need surgery or a stint. It is awful.  He said these are rare...but look at the cancer I pulled out of the hat.

Yesterday we spent hours at ACMC Mainland for simulation - where they tattoo your skin with markers, make lead shields for some areas, etc.  I can't believe I am writing about such things.  It is surreal.   They should be ready to start my treatments on Monday.  It seems so soon but really it is necessary.  The surgery will be 5 weeks then and the PET scan was over 7 weeks at that point.  If anything was left then they have to get started.

I now know what one day at a time means.  I can not look ahead or I won't get past this period.  I have to come up to see my dentist in Jenkintown, by Monday for a check up.  Since they work so near the mouth, in my case, there is a lot he will do [fluoride trays, meds, etc.]

It is overwhelming and we can't even think straight.  There are no words for it.    


I feel like this is a catastrophic situation.  Someone must know about it. We really tried to find that person. Thank you for your support. There really is nothing at all we could need or that anyone can do---except find out the answer to our problem.  Nothing else really matters.  Because without the right answer, there won't be any life.

SO I can't keep investigating the treatments of others.  During the simulation at the hospital, with the radiology oncologist, 2 nurses, a nuclear physicist, and one other staff member [something with physics], it was very uncomfortable.  The hard part is they make a kind of mask that goes on my face at each radiation session to protect parts like the brain and salivary glands.  

 

 It was 2 hours of CAT scans where I laid flat on my back and this 'mask' was secured tightly to my face and the table.  I can't swallow good yet [I need to drink with a straw and lean a certain way], without choking and to be in that position, was torture.  I couldn't swallow that way [flat on my back with my head tilted way back] as the saliva would build up and I would cough and choke and that made me move. They were very nice and understood and let me up every 20 minutes but still...it was tough.

Then they had to give me tattoos [no hearts or flowers ---just dots].  It is similar to the real things ---needles and dark ink.  That guides the radiation beam.  The nurse came in to give me side affects to expect and what to do for them.  And the dr. wrote out several prescriptions to fill, in case. They were drawing all over my neck and chest with markers to get the sites just perfect.

I have been exhausted and the pulse and blood pressure medicine is not adjusted right yet. SO that doesn't help.

 

4-20-02

 

Someone wrote Alan  from a major cancer center [ Anderson in Texas ] and said that chemo would be trying to overtreat me. We have dozens of that opinion now and only 2-3  on the chemo.   So we will scare the shit out of the cancer cells, if any are left, after they were knifed, with beams of radiation.

 

4-20-02

 

Yesterday I spoke to the physical therapist about my left arm lymphedema
and the interesting point she made is she didn't think she'd want me to come
into their rehab offices since so many people there are sick [like with
colds]. She said the lymph removal plus the regular surgery makes your
immune system weak and especially, if you are going on to radiation, I have
to really watch myself .  This doesn't seem like me I am writing
about ---what different emails compared to 6 months ago.

I can't wait to get back to normal again, if it ever happens.    These
constant drs. visits are tiring.  We had to see the vascular surgeon also on
Tuesday who managed my blood clot and gave me anti-coag.  They did an
ultrasound and the clot is still there.

 

It pays to get a common cancer; it increases your chances magnificently.  The stars were just not with me.  Lots of people have ectopic tissues in all kinds of places.  But something triggered it to grow there and thus my tumor.  Worse yet, it is malignant.  Most cases described in the literature are not.

 

The problem with all of this is there are NO protocols established on how to treat this since not many people have it.  That means there is NO set treatment.  That is the bitch of not having a common cancer.  They don't
know what to do with it.    This really shows the best side of people. There are so many things that can
help that don't cost money.  Hope is a great gift.

 

4-21-02

 

.  Anyway, this is funny - I have been given a medical mandate to start being in my 'sterile' mode.  Since they will be killing my good cells, too, [white blood cells, etc.]  my immune system will be suppressed and I HAVE to act the way I have been for years.  Aren't I lucky - some people have to learn how to be clean.  NO crowds, kissing or hugging people, cleaning off anything my hands will touch, even to the point of wearing a mask out, possibly.

 

Thanks for offering but there is nothing to do, except keep sending good vibes to heal me. You and Rich have done so much more than anyone so there is nothing to do. We just thank you for being there in so many ways for us. We stopped at your condo yesterday for 2 reasons. I wanted to be sure Sandy cleaned up well enough.  And Adam came down; I thought he'd stay over but after a few hours, he said he wanted to go home.  We spent most of the time over at the Zakuto house since they were making one of their dessert nights.  He was quiet but lighter in mood, our friends noticed.   I asked him what he wanted for his birthday next month and usually he tells me where he'd like a gift certificate.  This time he said, "For my Aunt to get well."  He is expressing himself more and more with the poetry.  I feel bad for him that he has to go thru what we went thru with my mother and Alan's father [just hoping mine has a better ending].

 

What you said about flowers is so true.  I truly loved the bouquets in each room but they were a lot of work.  Some, you have to add water to initially [the florist puts in a card]; they all need tending.  And then when they start to die, the leaves and petals make a mess that I don't have the energy to clean up.  And the odor of stagnant water......

 

Visitors have been sitting with us on the patio [my favorite place] for about 10-30 minutes.  Select people, of course.They understand when I have to go inside.  Because after one session of 'talking' that is about it for the day.  We found out  [in the hospital - I had forgotten]  I am anemic too, which doesn't help the fatigue and uncomfortableness.

 

Can't wait till I am not such a downer anymore.  - Someone, meaning well, told me only answer yes and no to their questions.  Sorry it didn't work ---  all   weren't yes or no answers, as is typical with me. So that was a frustrating "conversations."  Oh, do I have good stories for you one day.  People that are so nice and sweet and a few with gall.

 

  Thanks for your thoughts......and your help the last 2 weeks.  The best lead
was yours; Dr. Patrick Loehrer.  Mainly because of his credentials and he
said what we wanted to hear. A perfect combination and he and Alan did some
emailing, that made us feel a lot better about our decision.  It was
ironic - how all names came back to him.

This is interesting - Alan has been trying to find out information about
that oncologist we saw.  


Whereas the opinions for treatment that we are going on, read like this dr.
at Moffitt cancer center [MD from Loyola, Internship at Mayo clinic as well
as Residency at Mayo Clinic. And  2 Ph.D. degrees].

The other dr. got a Ph.D. from McGill in Montreal and then an MD from
Harvard.  He has received scholarships, grants, and teaching awards and we
saw his publications.  What do you think?

Everything is on the internet to make wise choices. It is incredible what
you can find.

4-25-02

 

We both love the card and had a good laugh at the picture of the chicken; we will keep it on the refrigerator because it makes us happy.

 

After we got off the phone, I thought about what you said about your eye whites and remembered what the drs. and nurses and the literature they gave me, told me with the radiation.  They said to tell them everything even if I think it is not significant because it may be an indication by dosage needs revising.  So tell your oncologist about the jaundice; it shows your liver is working hard to get out the bastards.  They deserve the death penalty.  That is what my friend Miriam wrote me.

 

How is John doing at HUP?  I would love to know what he feels about the care there, in general, if you are a patient.   Our friend just had big surgery there and he was so upset.  He was out of it [but in great pain] due to the anesthesia and when his wife came in,  there were puddles all over the floor and the bed was soaked.  She saw the IV was out and her husband wasn't getting pain medication; they called for the nurse.  It took an hour to come.  And the stories get worse after that. 

 

Well --- 3 down, 32 to go.  I am very very tired; it is unbelievable how I can just sit and stare for 5 hours after the treatment.  I am anemic too.  The beta blocker for the blood pressure is causing enough havoc in my intestines so I can't imagine making it worse with iron.  For now, the value is just on the borderline, so we'll see. 

 

The radiation is much worse than I anticipated and I have only had two treatments.    It was upsetting for the short while I was at the radiology department - the mask they made was intensely tight on my face.  It wasn't that way when they made it last Thurs.


 I had several panic attacks in between what they had to do to me.  It was
pushing my nose flat, it was so tight; it was pulling my eyes to the side of
my head and pushing my contact lenses into my eyes and it pushed my lips
closed so I couldn't talk or call for help.  I don't know how I am going to
endure this.  The worse pain was it pushed my cheek where I have the
trigeminal neuralgia. And then they screw it down into the table and there is absolutely no leeway.

I asked to see the dr. afterwards, and Alan and I told him my problems.  The
one we met  [there are 5 total] is from Fox Chase Cancer Center so I was
happy to  see that he was aware of my rarity and knew the up to date technology for it.  He said to have the technician cut out some of the mouth, for release; if they can't  make it comfortable, it will have to be made over.  Then the rest of the day, I felt not quite right - some heartburn, no appetite [it is not good losing weight this way - it is not controlled], and my skin is starting to get sensitive there.  But now it will be the front AND THE BACK.  The problem is that the skin is so sore still from the surgery.

Today, while I went to physical therapy [for the left arm and shoulder from the lymph node dissection], Alan [I didn't know he'd do this] went to the hospital to talk to them about the problem.  I was up all nite with an upset intestine.  When we got to the room for radiation, they took me to a small office to talk to me and a lot of suggestions were made. And the social worker was a huge help.

The funniest coinkydink happened; she handed us her card and when I saw her
last name, I asked if she was related to a Ph.D. I had at
Temple in the late
60's.  Turns out it is her father and he lives in Linwood now.  He was
instrumental with me going into teaching and back for my master's degree;
and we had kept in touch while I was in the school system.  What a small
world.

I kept thinking that this was a good omen - all during the treatment and it went a little faster for me.  Not easier, but less of a panic. I have to stay in that position.  I am not usually like this.  The initial biopsies, tests, and surgery with its blood clot and hemorrhage were easier to take than this treatment.  Try laying on the bed, FLAT, hang you head off of it, lower than your chest  AND TRY TO SWALLOW. TRY NOT TO SWALLOW FOR 5 MINUTES OR SO.

 

not-myself-Barbara

 

4-26-02

 

I am glad I am not doing both chemo and radiation together.  I know that would be suicide. 

 

My friend Miriam, the artist, said to envision the cancer cells as criminals ---very stupid, inept criminals, and that the radiation will kill them. You know, like those stupid criminals that Jay Leno reads about.  She comes up with great imagery for me.  Like picture them the al queda and the radiation is a nuclear bomb......

 

Monday was to have  been the first  treatment but it was put off till Tuesday since the lead blocks they made didn't fit right.  Rather than have me wait around, they said to come back tomorrow.  We went up to the dentist in Jenkintown [to get fluoride trays made, teeth cleaned, some prescriptions, check up and films].  Your teeth are more susceptible to cavities with the radiation. SO you have to do a lot of precautions.

 

It was upsetting for the short while I was at the radiology department - the mask they made was intensely tight on my face.  It wasn't that way when they made it last Thurs.

 

So on Tuesday it was as bad and I had several panic attacks in between what they had to do to me to get me ready for the zapping.  It was pushing my nose flat, it was so tight; it was pushing my contact lenses in my eye, and pushing my eyes back to the side of head and it pushed my lips closed so I couldn't talk or call for help.  I don't know how I am going to endure this.  The worse pain was it pushed my cheek where I have the trigeminal neuralgia.  . And then they screw the mask down into the table and there is absolutely no leeway.

 But now it will be the front AND THE BACK since they will microwave both.

 

When I was in the hospital they found out I was anemic, after the surgery [my hemoglobin dropped from 14 to 11].  And it is still at 11 so that may explain my fatigue and light-headedness and lack of energy still.The dr. told me the radiation will make me tired too.  How do you add tired on top of tired.  Call Goldstein's.


But we haven't even gotten to the side affects Yesterday, it left me dead tired for 5 hours.  All I can do is only just sit and stare. Absolutely NO energy to move.  Couldn't read or even close my eyes.  My throat hurts and food is not appealing at all.  I have to force myself.   So about
noon I ate a doughnut [chocolate cream filled].  Afterwards it just sits there not feeling great.

 

The other thing I have to be really careful about is the sun.  Our friend [on chemo] who walked on the hot sand, but didn't feel it, got an infection that was so severe, they had to remove her toenails.  I am really covering up because I don't want any more problems than I am going to have. The drs. don't paint a pretty picture and I can see it is getting tougher each day.

 

Usually I read every morsel on medicine and health and now I just push it aside and Alan does the reviewing.  I spoke to another woman [also a med tech who had Hodgkin's] and she said the same thing happened to her.   If I start to read something, I get an assortment of emotions so it is better not to.


For me, I guess I can only hope for a period of time where they leave me alone for a while, even if it is a few weeks, without seeing drs. or having tests.  But that is a ways off, for now. The weekend is actually a pleasure in one regard, even in spite of all the side affects and stress of the diagnosis and treatment options - I had the  days off from any drs. or hospital visits or tests and the CURSED MASK. It is so hard to explain how it feels - no undressing, injecting, scanning, no one poking me.  I have a really full dance card.

 

 I am starting to tell people who we accepted invitations to weddings and engagement parties to not expect me maybe. My neck is turning red and peel and become painful and then my back will.  They cook me on all sides. I can not believe I am doing this.  When we go in the hospital,  as we walk down the hall to the radiation area, my blood curdles now.

4-28-02

 

Dear Dr. Kelley:

 

Two of the lymph nodes taken from Barbara  were positive, nine negative. Were the two positive nodes the ones closest to the mass?

 

Did the electron microscope report come in from the pathology?

 

Thank you.

 Alan Neibauer

 

4-29-02

 

Dear Andy,

Nancy filled me in on your oppressive Rosh Hashanah. I  hope and pray that
you get nothing but good news from here on out.  Through the years, I have
always trusted my intuition and it tells me  that you will enjoy a total and
permanent recovery from  this thing and that the nightmare will end.  I have
read so many biographies about people who have had adversity.  One theme
that constantly comes up is how good friends or family made a difference,
mainly by just being there.  Just everyday conversation, taking a walk, and
doing normal things that help the time to pass are all valued by survivors.

That sure seemed easy enough to write; now if I can take my own advice.  I
am taking great comfort in all the people that have contacted me since this
began.  Some are old friends that we haven't seen in decades, some are even
older friends of my parents [members of the synagogue], some are parents of
our friends, and of course, new friends [like you] ------ it all makes for a
bright spot in the day and helps make this ordeal a bit more bearable.

Alan and I are also extremely touched by the medical profession. At times,
we both could actually sit down and cry ---they are 'that' nice to us.   It
is ironic; if we wanted to talk to a dr. [like a primary] about an issue,
chances are it is almost impossible to get them to call back, from our
experience over the years.  But our daily diet has been doctors from
Harvard, Yale, the Mayo Clinic, etc.  calling and emailing us for weeks,
trying to help us make sense of my rare cancer.  One dr. from Boston spent
an hour on the phone with us the other night.  Another at Ohio State
University Medical Center
gave us a 2nd opinion on the pathology of my
tumor; Temple sent him the slides and he read them  and for FREE.  Simply
because I was a medical technologist and he felt it wouldn't be right to
bill an allied member of the profession.  I never knew why - after I decided
to teach -  each year I sent away the form to keep up my ASCP [American
Society of Clinical Pathologists] registration. Now I am glad.

It was interesting that you mentioned the interferon.  Though I am not too
familiar with that [that wasn't around when I went to college], a friend of
ours has Multiple Sclerosis and has been self-injecting it for years now.
He says he has no side affects.  And it has helped his disease from
worsening.  But then,  I wonder if there are different types of it.

It is good that Sloan Kettering had something to offer you.  The gleevec
sounds like what they will have for each type of cancer some day.  We got a
call the other evening that  I am "too weird for Sloan Kettering."  That is
what our friend told us.  He is a G.I. doctor in PHila. and his sister is an
anesthesiologist at MSKCC.  We always have Passover dinner with them and
they wanted to help.

For weeks they have been searching for THEE dr. at Sloan for me. Since I
have a 'weird' cancer, Rich said,  his sister said there is no one that is
an expert in mine---or has even seen a case of mine. Sloan is very
compartmentalized.   Each dr. has a very narrow specialty. And they said I
am better off doing the treatment here and continuing as I am. On one hand,
it is a relief not to have to start over and trek to NY.  It is 3 hours each way from the shore.  But on the other hand, I was holding out hope that maybe at a big cancer center they would have a 'gleevec' for me.

In answer to your question, I do have a therapist,  from a while ago.  Have
Nancy tell you about our 'house from hell' on Byberry Road and before that,
my situation with the Phila. College of Pharmacy and Science.  Anyway, as
luck would have it, my therapist moved to Nova Scotia , Canada but we stayed
in touch and are doing the therapy via phone and email.  She knows me so
well and I just couldn't start all over again with someone new. And she is
wonderful.

Alan is my main pillar of strength, though.  And so loving.  He should get a
medal. I am recalling the morning of the surgery; the operation was 3 hours
late and I just laid on a gurney by myself. 


I felt so bad for him.  He sat from 7:15 till 8:15 that night till he could
see me again. Of course Nancy and friends were with him, thank goodness.
And the dr. would call him every few hours,  with updates.  But I just felt
terrible for him - his routine reduced to sitting in a chair in a hospital
room, the feeling of helplessness, and so stressed out.  That is what
bothered me most - how Alan sorely needed more rest.

By the way, if there is any way we can help you, let us know. Especially, if
you need computer help or research.  If you send us your mailing address, we
can send you a copy of Alan's recent book.

It is as hard for the spouse; how is your wife doing throughout this.   It
is as difficult for the spouse as it is for the patient.  People tend to
forget about the spouse. I used to do all the talking on the phone and help
him with the multitude of calls, so he could write.  But now the burden
falls on him. There are no words for him.   YES there are: THE WONDER OF
YOU. Do you know that Elvis Presley song. Well, last summer......  this is a
happy 'aside'

Alan surprised me ... on July 4th.   He sure can keep a secret.    We were
invited to a  friend's condo pool area for dinner .....she does this every
4th. Then we were going to all walk over to the beach and look towards
Atlantic City to see the fireworks.

But Alan went home after he dropped me and our cake off and said he would be
right back and bring back a surprise.  Well, he came back dressed in an
Elvis costume and wig [ordered on the Internet].  He announced himself as
ALvis.  And he told all our friend's to sit by the one they loved, he passed
out words to one of Elvis' song  ["The Wonder of You"], and said to sing
along.  He was so into the roll.  He was saying "thank you very much" the
way Elvis did.  Our friends' neighbors were coming out of their condos and
getting into it [someone yelled "Elvis is in the house"].    Everyone wanted
their picture taken with him.

And when we walked over to the beach, horns honked at him, people yelled "I
knew Elvis wasn't dead."  It was a scream. And Alan is saying, "The King
Lives."  It was romantic and fun.

How are your children handling this or are they too young and do they not
know really what is going on?  The other person I feel so badly for, is
Adam.  He was such a loving, dear, sweet young child and now is that way as
a young man.  He is very supportive of us now and has had some mature
conversations with us about it.  He told Alan, when I was out of it after
surgery, that he is sorry about all this.  He took me for granted, he told
Alan, and always expected me to be there.  When I was in the hospital - he
came and read poetry to me [since I can't talk].  He feels more comfortable
in expressing himself that way, writing poems in lieu of email chatter.
When I asked him, as I always do, what he wants for his birthday, he said
''just for my aunt to get well.'' So non-materialistic. But harder to 'buy.'

Thank you for keeping me in the weekly prayers.  It is a comfort to know
this and it HAS to work since so many people have told me they are saying
prayers for me at their synagogues and churches. I will pray for you at
"Temple Beth Mer" [that is what we call the 'synagogue by the sea'  - French
for the beach- because it is so beautiful, we feel if God is anywhere, he
has to be there]. Actually, some local synagogues conduct various services
from time to time on the beach.  It is lovely to observe.

Sorry you have to endure this.

Love to you and your family,
Barbara

 

4-30-02

 


After about
4 p.m. , I was able to get up and put wash in the washer. A big event. This is pathetic. So not me. That little chore pooped me out and then I had to sit again.

So this is all new to me and I don't know what to expect from one minute to the next. They say it can last for up to 6 months after the last treatment;  or you can have other permanent effects.  I feel like they are microwaving me and who knows what is happening inside.  As long as they don't do to me what they did to my mother.   We hope upon hope they are being very careful because this is being watched and written up due to its "extraordinary rareness.  I remind them all the time; like the resident called me from the surgeon's office and needs some pictures for a journal report they are doing.  SO maybe if they know they are being 'looked over,' then they will be vigilant.

Since I have to avoid the sun, I got some big hats today.  But I already have a big hat I made up years ago with tons of plastic fruit on top [like Chiquita banana].  Originally, before this all started this week, I was going to wear it to and from the car at the hospital but I just don't feel like the terror of this situation calls for humor yet.


We are glad to be at the shore.  When we leave the hospital each day, the first thing we see as we go out of the door, is the water down in the bay, the boats, and the island with Longport or Ocean City on the other side.  It is so picturesque compared to if I had to go to Temple every day and see the graffiti.

We went out to eat something lite one day and of course we picked a breakfast place o on the water and it was just so refreshing after being in the basement of the hospital being zapped.

One other thing; we have become friendly with the agent for many of the ABC daytime male actors [she came to lunch for the carriage tour, etc.].

 

5-2-02

This is the 'poem' my sister sent me:

 

Burn baby burn.....
burn up those bad cells
burn baby burn
burn those c cells up!
(disco inferno)

I don't think they give you a 'radiation holiday' unless you are in bad shape from the treatments...they push you and push you and give you the maximum tolerated dose.  Not my usual way.  I always take the smallest dose that will do the job.  They consider your weekends off as you vacation.  They are surprised I have so much pain already.  They say it usually doesn't become this severe so soon.  So what else is new.  I had to remind them I am recovering from surgery in that very same area and it wasn't healed from that yet.

 

The medicine works for 3-5 minutes.  Gots to chow down fast.  And it still hurts inside.  So I usually only take it when I eat.  The fibrosis is the scar tissue that the radiation is frying into  a hard who-knows-what.  I don't know if it is permanent.  I was too upset to ask but I will next time. 


Alan and I dug out the forms [katas] we did in tae kwon do and reviewed them.  During the treatment I try to go over the steps in my head, as if I were doing them; it takes immense concentration [some have 35 steps].  I am getting better at concentrating, if nothing else.  Everything helps.  So they are my trancing scenarios.  And when I get better, we will do them on the beach.

 

We got one more piece of encouraging news, sort of.  The surgeon said that the 2 lymph nodes that were taken out that were positive were involved with the mass.  The other 9 lymph nodes were negative.

 

I appreciate all the sites and it would be a great help, though, that when you find them, if you could just copy the stuff you want me to read.  I am so tired lately that all I can do is a few emails a night and then I don't have time for the internet, too.

 

Thanks for all your help and most importantly, all the encouragement. 

 

linear-accelerator -Barbs

 

First, the trays fit perfectly - absolutely nothing to trim.  They are very
comfortable.

And we finally got the RX filled, you can tell everyone.  At ShopRite in
Somer's Point!  They were so accommodating.  There was another pharmacy who
could order it also [in
Atlantic City ], that we found as a backup.  So now,
when I get some energy, I will send CVS a scathing email.  That felt good to
write that [that's the old me coming back].

When we were there last week, I forgot to ask you how your mother is doing
since Pam died.  Did Pam have chemo or radiation or both.  Just curious.
Since then, I know 2 other med techs that got breast cancer.  Isn't that too
bizarre.