May 3 to May 28, 2002

 

5-3-02

 

You are so right about what you said about people meaning well but not knowing what to say.  Like you, we'd like to choke a few too. If nothing else, I hope this taught us what to say if we ever know anyone in this situation.  We have found that the people that have had cancer say very little.  That is probably the best path if there are no answers. That is a shame about your sister not being as sensitive to you as she probably is to her patients.  I just think some sisters do that.

 

About John Glick.  Years and years ago I met him when I planned an AIDS seminar with a nun from Holy Family College [1985].  And friends of ours, who have moved to CA. said I should use their name to get him to talk to us.  Our friend was his first Fellow in oncology back in the '60's and his wife and I were in med tech school together.  So Glick [and for that matter, NO ONE from HUP] has returned our calls.  Drs. from all over the world have emailed or called us, to the point that we could cry at how nice people have been. But we are so disappointed in HUP.  Glick finally emailed Alan and it was a curt note that he had no experience with my type of cancer.

 

So our friend, Mike in UCLA, presented the pathology report to his staff there and they all commented and made the consensus that radiation is the way to go for ectopic thymic cancer.  This was reinforced by  a few dozen other experts around the world. so we are at peace with our decision.

 

It is good I can have the treatments here.  The way I feel from the side effects, I can't imagine the drive to and from Phila. everyday.  Shore Memorial has been good.  They have a good system there - I have never had to wait more than ONE minute before going back to the linear accelerator room.   The radiation oncologist gave me tons of booklets [some from the cancer society] on the radiation, skin care and nutrition.  And dental care - very critical with head - neck cancers.  I am very impressed with the set-up at the hospital.  Every day, a dr. is available to talk to you but on Tuesdays, you have a standing weekly appointment to go over everything.  Every day there are radiation oncology nurses at your beck and call.  Plus there are radiation therapists that are knowledgeable and a radiation oncology social worker.  Nothing slips by them.

 

The visit with the dr. this week [and he is from Fox Chase Cancer Center ] was good and bad; bad ---he laid out the side affects coming down the road to me.  He anticipates my throat being so sore [and filled with craters] that I won't want to eat.

 

Good---if I survive this, he feels that the radiation and the surgery were the best course. Especially after he saw my PET scan results, he felt positive.  The PET scan showed there were no cancer cells anywhere else in my body except the neck area.  He is the only dr. that gave us a prognosis. He said he wouldn't have recommended the local oncologist's [J. Child's] plan of chemo.  She was like a car salesman, I hate to say it. There is no proof it does anything on thymic tissue carcinoma.   I like him; he is honest and helpful.  He sits and listens to all our questions - no rushing us out.

 

   The radiation is much worse than I anticipated and I have only had 9 of the 35 treatments. 


 I had several panic attacks in between  what they had to do to me.  The mask was pushing my nose hard and flat.  And 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.  It is hard to endure this.  The worse pain was it pushed my cheek where I have the trigeminal neuralgia.   [long story]   And the neurologist finally got my dose right  so I don't want it to come back.  And then they screw the mask down into the table and there is absolutely no leeway.

I am not sure the best time to plan to meet.  We'll have to see how I feel.  I know you said in a few weeks and I have 5 more weeks of radiation and each will bring worse side effects, the radiation oncologist told us.  All my prescriptions are lined up.  Alan and I do want to take a ride to
Cape May before the season starts, but after the treatment,  it takes me about 5 hours to 'wake up.'  And my throat is severely sore plus I can't go in the sun unless the area is totally covered. 

 

5-4-02

 

I really appreciated the card and photo.  It came on a day when it was so needed; just to see Jimmy's face was good for  a few laughs.  

 

It is working ---the prayers and candles.  SO thank you for that also and keep it up. Please.  Even though, it is far and few in between, we got one  piece of encouraging news, sort of.  The surgeon said that the 2 lymph nodes that were taken out that were positive for malignancy, were involved directly with the huge tennis-ball sized mass.  The other 9 lymph nodes were negative.

 

And Steve, here is something I know you will recall. You know what I just remembered today.  Do you remember  at the beginning of last summer, after Kenny left the beach, when some kid and his stupid mother were playing ball on the beach and it hit me in the throat and everyone heard that crack.


It was in the spot where the tumor grew.  What do you think.  Maybe the thymic tissue was sitting there, all nice and benign, and that trauma, changed the cellular structure. I guess that's as good a theory as any.

Love,

Barbara

 

9 DOWN AND 26 TO GO. The weekend! FINALLY!  My radiation holiday.  Do you want to hear something very weird.  The lady that goes in for her radiation before me has breast cancer [2nd time] and is 80-something, but freakier than that, she WAS a medical technologist.

Now remember, Gail [from Frankford, 41 years old] is a medical technologist and has breast cancer.  And the lady  on the beach that had lymphoma years back, is a medical technologist.  And our friend Lucille who is in charge of the Jeanes Labs, is a medical technologist and lost her breast years ago.  And the next one, did I tell you, was a friend from 15 years ago, Pam, died of breast cancer last summer - she was a medical technologist that I knew from PCPS. Pam was the person in charge of our seniors at
Cooper Hospital .  She always wanted to teach and left Cooper and went to Edison .   Isn't that cancer in med techs, all too much.

 

 I don't need any medical oncologist now, only the radiation oncologist.  Not schooled in being a cancer patient, I had no clue about  what each dr. does.  When I went to her originally, I thought she'd manage my side effects.  I had no idea that the radiation oncologist does this - he has a team to help me. Every day I see someone and ask questions and get RX's. 

 

The social worker left on my radiation table, for me, her father's email address . Dr. Sutman - from Temple education department so I sent him an email. And he called me today.  It was too amazing.  And the 4 of us will go out for breakfast, if I am able soon.   Another PA. person, settles at the shore! Your heat sounds too oppressive down there.  You will love the fresh air here and be rejuvenated.  Tonight [it stays light till after 8 now], Alan was planting some of our annuals and it was actually cold in the garden.   But since I still run kind of warm, it felt good.

 

I have to have my neck skin checked out good next week. The dr. at the hospital says he sees  there is a fibrosis problem beginning.   He  noticed my neck seems hard in some areas instead of soft.  The scar tissue from the surgery being fused and contorted and mangled by the radiation.   So Fri. we go up to see the surgeon and will ask him too.  The radiation oncologist wants me to get physical therapy for it.


So of course I have a problem with the insurance.  They have been dragging their feet in approving my visits for the lymph-challenged arm.   I took the script to the Bacharach Rehab center in Somer's Point,
New Jersey on April 24th and I had made a follow-up appointment for May 1st. But Linda, at the rehab center called me and told me not to come because my visits hadn't been approved. I just sent them a nasty email

 

Did I tell you that when the Rabbi wrote me again, he said he was keeping me in the weekly prayers on Friday night.  My sister never told me that.  I was pleasantly surprised.   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. Lighting candles, etc. It can bring one to tears. I told him I will pray for him 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].

 

He said I will have to be constantly monitored to be sure IT doesn't return. Other than that merde, live a normal life. Which sounds like it will never be normal again.   I will be watched for the rest of my life, the dr. told me .  One of the surgeon's residents called me and she needs copies of some of my scans for the publications they are starting to prepare. 

 

We are glad you are enjoying the internet - from finding obits to seeing naked men.  Alan found a site where they do the news totally naked.  It is a scream. With straight faces.  He left it OUT of his book. We adore the internet.  It saved me a surgery last month and it got us public water at our house from hell. 

 

Take care. Say hi to Arthur.

 

5-6-02

 

After the weekend off, it is back to killing bastards again.  As soon as I
walk in the hospital,  I start to go into some sort of 'mode' that I can't
explain.  I sign in, sit down, and it seems like they must know how nervous
I am, so they call me back immediately so I don't have time to dwell on
'it.'  You know, I don't even know what else is in the room - they guide me
to the table, I lay down, and the paper you lay on moves a lot, my head
hurts from the weird little pillow, and then the mask tightens.  No
pleasantries - nothing.  Very sterile, in a sense.  I will suggest that they
should take someone thru a dry run first.  Up until this, I really didn't
feel like a cancer patient. How quickly things change.

I am trying not to take a tranquilizer first.  There's too much in me
already.  Today we went to the gym first; I figured if I could tire myself
out a little first [and it doesn't take much doing at this stage of the
game], then maybe I'd lay there calmer because I was so exhausted.  I did
about 20 minutes of my favorite teacher's aerobox class.  She ran up to Alan
and I as we came into class because we hadn't been there for 6 weeks.  And
after 10 minutes, I was zonked from that little bit of exercise.  I pushed
to do 10 more minutes. Her class is usually 1 1/2 hours and we used to do
it. So it did calm my nerves a little to exercise, even though the mask was
still tight and my neck was so far back that I couldn't swallow.

 I can't develop a 'formula' for any of this because it changes from day to
day and luckily it is all new to me.

 

Sunday Nancy wanted to come down to celebrate Adam's and her birthday but I
have been too exhausted so Alan made a contingency plan. He got the Longport
community center [a great little building on the beach that we didn't know
about] and decided to order food and make the gathering there for  the
birthdays.

So when I got there, Alan had invited many a few of the others that were in
town this weekend;  some are not in their circle.  But it was fine and fun
to sit and see everyone together. I didn't have to do a thing. Just sit and
breathe. He hired a woman to set up and serve the food and clean up.  I
thought it odd though; but with Alan you never know.

Then while we were there, he got a call from Karen [she's the one who is 31
and has ovarian cancer], the actors' agent, and she was on her way too.  I kind of thought she might
visit [she told me last weekend she had a gift for me and wanted to drop it
off].  She asked me to come to the cell phone and she told me "All MY
Children"  and "One Life to Live" stars were on their way, and some others were on their way down to wish me get well and do a photo     shoot on the beach.  Seems there is this environmental foundation and they
wanted to put the stars in their next issue of their magazine and Alan volunteered to take the pictures.

As it turned out,  Karen, the agent, arrived and, she was not feeling well again and started bleeding from her mouth.  She went to the pharmacy to get some of her prescription filled and when she came back she did not look or sound well at all.   Alan Zakuto felt she should go to the hospital but she didn't want to go to the local one here.

 She had also called the celebrities who got stuck in the tunnel coming out of NY [bad traffic jams] and said they wouldn't arrive until 9:00 . We all decided to abort the mission since we knew that was too late and really pushing it - she called and told them to turn back and this way she could go home and to the hospital near her.   She felt bad that the mishaps with timing had occurred and was very upset and we all had to convince her that it didn't matter and we would re-schedule this when we both could handle it. It took some doing; she didn't want to leave but she was in bad shape and we guided her to that decision.  Now we wait to see how she is. It is very upsetting.  Shades of my mother and Louellen Wittenberg.

She wanted to come down again next weekend and try again but I said to skip
it till I am done the treatments. It is too much I found out yesterday..

5-7-02

 

Thanks for telling me that your friends as well as your mother [I can understand how she wants to get home] were so tired too.  I am now in utter exhaustion and a fog from the Rx's I  need for my esophagus - it is excruciatingly sore.  Worse than not talking, is I can't swallow without pain so eating is  limited to things like milkshakes. Which still kill me as they go down.

 

I checked out about wearing contacts vs glasses under the mask.  The glasses won't fit.  The mask fits ear to ear and leaves no room for them.  I would have more panic attacks if I couldn't see so I need the contacts in for when I decide to open my eyes.

 

I suppose the older we get, the more friends we will lose.  It is hard when they are young, like Pam.  My father died at 45 [heart attack] and I can still see the faces of their friends.  In fact, once in a while, we meet some of them and they say how it affected their own lives.  It sounds like Pam had a terrible time of it. After I read your email, I remembered you telling me some of those details.

 

Who knows if it was the wires she lived under. We do a lot of guessing too.  When I was a fetus my father was in the army [1945] and they were stationed in Arizona . That was next to N.M. where they were testing bombs.  Or I breathed 2nd hand smoke for the 21 years I lived in the house [my father smoked 3 packs of Camels per day].

 

The mask is no more comfortable but I am learning to go into a 'trance' to endure the long minutes I am locked in.  But the best thing is when I hear the door open and the therapist's feet walking towards me to pull the table out.  I asked why they don't have the suction tube like you have in your office, for the saliva.  That would be a great help.  She just looked at me.

 

I have no appetite at all and have to force myself to eat.  It is not pleasant for  me just to swallow saliva or water; I dread when I have to eat.  It is so inflamed, like a bad sunburn and then like swallowing whole chunks of scratchy pretzels or sandpaper.

 

 Thanks so much for calling on Saturday; it was nice catching up.  Lately, since this illness, it is very reassuring to talk to people from the past.  I suppose it takes me back to a more pleasant period.

 

We will probably have to put off that breakfast until this treatment is over.  As if the actual treatment weren't bad enough, because I have to put  a mask on my face that is bolted to the table in an uncomfortable position, I developed esophagitis.  Cathy can give you the details on that. 

 

The esophagus is excruciatingly sore.  Worse than not being able to talk,  is I can't swallow without pain so eating is  limited.   My surgery did not hurt like this and I had what they call a neck dissection.  I did not need one pain pill the week in the hospital or since I have been home. Until this.

 

  5-8-02

 

Hi Rich

Hope all is well. Barbara's esophagus is excruciatingly painful. She has a lot of trouble swallowing and hates to eat. They gave her Carafette (forgive the spelling), some mixture called "miracle mouthwash", and Tylenol with codeine. The mixtures don't seem to work very well, and she hasn't taken enough of the pain med to get results yet. Do you know anything else that could help?

 

Alan

 

5-11-02

 

Thank you for all the emails and all the information.  As for the question on when the esophagus would heal, they say those type of cells do recover faster than others in the body but they didn't give me a number or days.  I think they are beginning to know me by now ---I don't fit in with their range of normals.

 

Thank you for reminding about the war.  I need to keep that in the forefront.  I appreciate the cheerleading, on your part, since my mind is dulled from the drrrruuuuugs.

 

I took some ensure today and we have whey protein powder and also predigested small branch plant protein capsules.  Just concentrating on forcing myself to eat and drink.  It takes the whole day just to do this. The preparation, the act of, and the recovering.   The surgeon encouraged me to get things like Hagan Daaz and high calorie anything; he said my body is burning calories at a phenomenal rate [pain burns them plus the immune system].

 

The other question you asked ---the dr. was just wondering and needs more information to say for sure.   It isn't about the esophagus - that he said can't be helped because the mass was right there, unfortunately.  But  maybe, he said, they will 'cone down' away from it a little during the last 2 weeks.  One of my radiologists alluded to that also.  What he  would do, is direct the beams differently-he isn't sure how much my spinal cord is getting so he wants to see the simulation films.  It could be ok but he said he can tell by the films.  This is going to be tricky. 

 

When you said how much your mother is taking, I surely can sympathize with her not to take one more thing.  I know how she feels and it is  a shame.  But this one medication could improve her quality of life, if she can see her way to try it. 

 

Every once in a while someone does not give us the support [like you do].  They say really stupid things.  We are learning to turn off these people, quickly.  An aunt called us , who MUST have been talking to others in the family who naturally must be experts on my condition and what I have been thru the last months, and she said, "Are you satisfied with your drs. DOWN THERE?"  Kind of insinuating that we haven't done our homework.  I turned the phone over to Alan right away.

 

Time to take my codeine.  I better not become addicted......

junky Barbie doll

 

5-12-02

 

We loved your analogy of rationing and bombed out esophagus.   You are so
creative [you could write a helpful book].  It seems like when they give you
radiation, some vital part is always in the way so they have physicists
designing your radiation to avoid it as much as possible.  That is the best
they can do; so we know my spinal cord is getting some, sometimes.

You are the 2nd one to write to me today that there is light at the end of
the tunnel.  Everyone sees it but me;  I am too enveloped in pain.

To answer about my 'leisure' time.  Reading is tough but I am sloooowly
reading a Patricia Cornwell mystery - forensic and fast moving.  But I only
read about 10 pages every few days.   I like the Sunday paper and some
magazines [maybe 2 a week - one is my soap opera update].  For TV, we only
watch comedies.  Alan will watch action when I am on the computer.  Together
we will put on "Friends" or "Drew Carey" or "Just Shoot Me.''  We never saw
these the first time around and they are very good; they really divert my
mind for a while and we can laugh. So if I can find something for me to
laugh about on these shows,   then they must be superb. After we see these
and start to see re-runs, then we'll try some other sitcoms.

Now I start to get nervous for Thursday; not only do I have my treatment BUT
they need to do the HALFWAY CAT scan.  Normally, I'd be thrilled - it
determines how they will 'cone down.'  BUT, and that is a large BUTT, I have
to be wearing my mask during it and be bolted to the table.  So instead of
my normal 5 minutes of not swallowing, we are talking about ANOTHER 30
minutes more. I may take extra codeine.

barb-b-qued

 

5-15-02

 

Welcome back!  And thank you for the compliment, too.  The glow you see is
radioactivity from being flame-broiled like a Burger King whopper.  A lot of
people say  - even the drs - that I look good so then they extrapolate I
must feel good.  Maybe they all know something I don't know.  But I wish I
could tell that to my esophagus.

Each time I think that 'this' week is the worst, then the next week
supercedes that.  I had to see the radiation oncologists each day last week
since my esophagus is getting more and more burnt .

  Friday in Phila. went as well as could be expected.  The surgeon wanted to check me over and he said
the burn in the esophagus is similar to the damage when people ingest drain cleaner.  What an analogy.  They threaten a feeding tube if I lose too much weight.  I will refuse.  Sometimes I feel like I have had enough already.

I only can eat 3 spoonfuls of food at a time now, after I numb the area.
Before it kills me to continue.  I had mashed potatoes tonight with baby
food veal from a jar and pureed carrots.  Talk about regression.

We added one more stop since we were up there in Phila. anyway.  There is a
radiation oncologist at Hahneman that is world renown and we were able to
get an appointment with him  that morning.  The dr. at Hahneman said there
isn't any way to avoid the esophagus.

The worst last week was that clumps of my hair started falling out; it
doesn't seem too important in the scheme of things but it was just  shocking
at first.  Today I was outside IN THE SHADE, watching Alan  put together a
chair and I itched the back of my neck [I think there was a bug flying].
And a handful of hair came out into my hand.  And it blew all over the
place.  That was traumatic to feel my hair all over my arms.  But at least
that doesn't hurt.  Though I hope it stops soon; I have no wig. They told me
I wouldn't need one. And they still insist that most of my head will be ok.

 

5-16-02

 

Maybe.  One of the radiation therapists mumbled something today  about the
radiation oncologist wanting to add more treatments with the old mask.  I
made like I was deaf; I don't want this information yet...if ever.  It is
bizarre how good a patient can get at not wanting to know certain details.
Sometimes I just feel like I am on overload and can't take any more.

That is when I lose my sense of humor.  I hate to stifle Sliding Billy Watson, but
at times, life is just too overwhelming.

They said that once I am through being irradiated, the healing will take as
long as it took to get sore, which was about  12 - 14 treatments.  But we'll
have to see; I  don't fit in with any formula. The fatigue could take 6
months.

That is an excellent idea about the cookie and pretzel mush - madeleines. I
loved reading Proust.  I had a book of solely letters he has written.  It is
great.

My mouth is not very dry most of the time - only when the codeine is fresh
in my system.  The radiation oncologist is making it a point to miss my
salivary glands, hence the reason for the lousy, stinking mask. That was its
purpose, too.

Well, as 'typical-Barbara' YES, we were surprised with the halfway scan.
There were unpleasant surprises.   The computer broke that transmits the films to the
nuclear physicist's computer [that is how they plan the lead blocks to
protect me].  SO after laying on the table an hour and a half, they said I
may as well leave.  If it can't be retrieved, guess who has to have  the
half hours CAT scan over again ---laying there with the mask bolted.

They  made me a new mask also and they will start using it after 6 more
treatments.  Or so [? - we just don't know because of the fiasco].  And I
get a new 'pillow' - that is what my head bends back on.   I tried it out
today.   It is good news - that means the world to me.  The mask is more
humane in the way it is bolted down to the table with my head in it so it is
kinder and gentler, so's to speak.  It changes the acute angle I have to lay
my head on.  So I can swallow.  The prayers from everyone are being heard
and working.

SO do you have to buy a shower gift for  Karen?   Enjoy your Italian fete.
I envy your esophagus. Have some garlic bread for me; my favorite.

Crispy critter Barbie Doll

 

5-17-02

 

 My Grandmothers went the same way and we were okay with that because they were spared suffering.   The daily pain of not feeling well, seeing drs., getting treatment, taking medications, having tests, etc.  is not what most people want.  It is definitely not what I want and I can't believe I am doing it.  I always said I wouldn't but here I am lured by the  chance that it will end and that will be that.

 

 I had to see the radiation oncologists each day this week since my esophagus is getting more and more burnt - they think I will need to have a rest in between the treatments, it is so bad.  But it is not good to take one since the cancer cells, if there are any there, can start to repair their DNA and grow back.   Inside my neck, it is not good, no matter how I look on the outside. The pain is getting to me.


I am now in utter exhaustion  from the Rx's I  need for that - the esophagus is excruciatingly sore that I need codeine.  I never take that stuff. But I can totally understand.  I have no appetite at all and the drs. told me I have to force myself to eat, so the immune system doesn't get more compromised. 

 

Thanks for your encouraging words.

 

5-19-02

 

...unless the radiation oncologist changes his mind and decides to add some.  The surgeon said not to take a rest from the treatments unless medically necessary because it gives the cancer cells DNA time to repair and start up again.  So we keep at this nightmare.

 

We are trying to keep my weight constant.  It takes the whole day to deal with this.  The radiation oncologists have their own nutritionist there for us every day and they watch over all the patients carefully. It is very organized - logs, etc.  My friend sent me a cancer cookbook [what an addition that shouldn't be on anyone's coffee table]. Then there are a lot of tricks I am learning. Moistening is the key; we are always 'in school.'   Constantly being educated.  I am re-learning how to eat.  It took a week or so.  Everything must be moistened well, for starters - like, I soak cookies and pretzels till they're mush.  Just for a change of taste.  Today we bought egg drop soup [ beaucoup de nutrition]. 

 

Once last week during the treatment,my esophagus started to burn from the excess saliva building up that I couldn't swallow.  I had to swallow halfway thru the zapping so the radiation therapists had to stop the linear accelerator, unbolt me and let me sit up and then realign me.  A tickle in the roof of my mouth was making it miserable.  The dr. said to take cough syrup ahead of time now ---on top of my codeine.  We's be flyin'

 

I just have to keep remembering that this is war.  We loved my friend Miriam's analogy of this is war time and I have to kill the al queda with 'nuclear bombs'; yesterday, she took it one step further.  With the problem eating food, I am into 'rationing' [which always happens during wartime] and avoiding my  'bombed out' esophagus.   People are so creative.

But war duty down in the trenches is tough.    I spent most  afternoons, after we get home from the hospital sleeping.  The fatigue is really starting to set in. I usually am not a  nervous patient but last week on Thurs. they not only had to give me my treatment BUT they needed to do the HALFWAY CAT scan.  Normally, I'd be thrilled - it determines how they will 'cone down.'    That means do less of an area.  So God is listening to everyone's prayers; I am grateful for small improvements,at this point.

 

Alan is fine, thank God, and working on a 2nd novel  [to be published in the next month].  He needs some distraction and it is good he wanted to do this.  He seems to be putting on a good front for me.  He wishes he could do more.  There really isn't anything anyone can do. I have everything materially ---it is just health that is needed and we are doing everything possible to  get it back.

 

He  went to the Ventnor Movies the other day [at 6:00 A.M. ] to see a special showing of the new Star Wars - free tickets were given to us by our friends that are D.J.'s on the oldies station here.  I didn't go so he took Art Frieberg. 

 

.........unless the radiation oncologist changes his mind and decides to add some in the new plan.  There aren't any sprays to use on the throat - I have coating liquids with anesthetics in it [nothing lasts to long]. We have to be very careful not to use anything that will burn it even more.  Ice cream does that ---even my liquid pain killer fries me sometimes.

 

The hair is in the line of fire in the back of my neck.  It is complicated how they make up the radiation plan.  So you don't get too much of a dose from any direction, they divide it up each time [it is called fractionation] and some of the time the linear accelerator cooks me from the front and the table turns and then it cooks from underneath.  They try to avoid longs doses on the spinal cord,etc. this way.  So  Friday, after the treatment, we went to Resorts to get our hair cuts.  We had a wedding Sat. at Renault  Winery.  Mine needed some special attention to cover where the hair fell out.  She did a terrific job and when I left, you couldn't tell.   If I don't need a wig, then I may order some hair extensions to fill in, as a treat to myself.  She had some good ideas.

 

 The fatigue could take 6 months, they said, because normal cells have to be replaced.

 

My legs are strong enough to walk short distances if I can hold my head up long enough.  Sometimes I can't even will myself to sit up.  But today we walked to WA-WA for a cappuccino but I needed to sleep when we got back before I could drink it.  The other evening we walked down to the beach [14 houses away but it seemed like 5 miles].  But the fresh air was great. 

 

And I really forced myself to get to that wedding yesterday.   .  The wedding was the daughter of our friends Art and Marcie Freiberg, of Margate , originally Richboro.  It was an interesting affair.    The bride is Jewish and the groom isn't and they were married by his brother [a minister] and the mayor of Longport.   It started late because a bus forgot to pick up some of the wedding party.  And it was held outdoors so it was damp and cold.  And the sun started to shine.  I stayed in the winery until it started and by then all the chairs were taken so Alan got carried one out for me and we put it in the shade, in a gazebo. 

 

I actually found something I could eat at the cocktail hour and it served as my dinner - these very soft and oily tortellini [mushy, slick with olive oil, and slid right down].    And there was a chocolate mousse for dessert. We even danced to some oldies.  But I needed to rest a lot in between.  The little excursion was good.  I really want Alan to have as normal a life as possible during this and he loves the rock n' roll so I did a modified version of my usual craziness. The Renault winery is about 45 minutes from here and on these very lonely roads.   And we forgot the car phone, got lost a bit, but it was fine. 

 

Speaking of weddings, this is so funny.  Alan got on the internet and became an ordained minister today with the church of Universal Life .  And this is even more hilarious.  In the state of NJ, he can perform weddings. 

 

Thank Don for the lovely thank you card.  We were impressed how he did the script  on the computer and it was lined up perfectly.

 

We are so sorry to read how ill he gets; I can really understand the car motion.  You may be on to something with the anesthesia.  it can stay in the body up to a year.  Depending on metabolism of the patient.  This time they gave me great drugs to combat it [because I knew from 20 years ago] but if you don't ask for them, they don't give them.  I know I could barely eat a quarter of a bagel last time...or 6 strands of pasta.  The drugs and the trauma of surgery can turn anyone into an anorexic.  He will get better.  If he can exercise and speed up his metabolism, he will get it out of his system.  The holistic pharmacist here also told me to stimulate my gall bladder so the drugs get excreted faster.  That would be lots of water and fiber or even lots of oil to get it started. 

5-20-02

As I told a friend yesterday [who just started Weight Watchers], don't dwell
too much on your weight.  It really doesn't matter much in the scheme of
things [unless you are obese].  You always need a cushion of 20 pounds, as I
am finding out now.  You never know when you'll need it; it can be
life-saving.  And I sat at the wedding with a woman who has ovarian cancer
and she is on her FOURTH set of chemo, the poor thing.  She ate JUST like
you - only healthy, natural foods and she is a vegetarian.  She says she
asks her drs. how this happens; they  shrug their shoulders.  Who knows.
She is child-free like us; she asked if she had kids, would it have helped.
They said no.  You can't figure out what goes on.  Terrorists never feel the
pain she and I have; they feel good every day - no cancer for them.  Go
figure.  But eat and enjoy - we humans have very few pleasures in between
bouts of bad things happening.  I say, if your esophagus feels good - EAT!
New mantra!

 

19/16   But the radiation therapist told me today that they added more treatments to my plan.  That took the bottom out of my fastidious counting every day.  I know of at least 2 more and she said the dr. will have to finalize the rest. Merde!  Alan said they just like to keep me coming around everyday because they like my company.  I could promise to visit and just skip the daily burning.    It never pays anymore to be optimistic about anything.

 

It is upsetting when people stand over me and tell me how great I look [???] since inside my neck, it is not good, no matter how I look on the outside and the pain must show on my face.

 

5-21-02

 

This seems endless.  Every time I go into that place, they find ways to keep
me there.  Today while the mask was on and they were broiling me, the
radiation therapist said they have to leave the mask on a little longer,
while I am on the table, to take some pictures.   It seems every two weeks
they do this to make sure the beams are lining up right and they aren't
hitting anything they shouldn't be.  SO since it is still the old mask, I
couldn't swallow and was near choking by the time they unbolted me.

Then I saw the dr. for my weekly visit and he said they want me there early
on Thursday to do some more films and scans. It will be a while [in the
mask].  Oh, he read me my blood test results.  The good news is my
hemoglobin went up a little, and that is especially good to help me fight
the radiation damage.  The other news, which he said we won't even deal with
now, is my cholesterol is 398.  But we switched to regular milk and regular
ice cream and BUTTER.  And whole eggs.  So what.Who cares.

Friday we are coming up to PHila. - to Hahneman -  to see Dr. Brady, so he can check on my condition, review the films and see if the plan is correct.  You can't have too many opinions, we are finding out.  So when we get back to Somer's Point, we will go to the hospital for the radiation, in the afternoon.

 

Yes, in  answer to your question about the fluoride.  I had trays made at the dentist [for which I just found out, the insurance won't cover ---they are in for a fight].  I fill them with a gel, once a day.  It was another fight with CVS because they wouldn't fill the RX for it.  So we went to Shopright.  But  I don't have the severe dry mouth your friend has.  The radiation oncologist is avoiding my salivary glands in his beam plan - one of the reasons for the mask.  It holds my head still so I don't move and get other organs in the rays. 

 

Cameron, called us last week - a few times.  We kept missing each other.  He left us his dressing room number finally.    He spoke to Alan about an hour. I was way too hoarse.   He was so gracious in apologizing for all the snafus that Sunday.  He told Alan a lot of stories.  So when I am healed and feeling good, I know that there will be lots of rainchecks sent my way.  First things first.......

 

Yes, you are right.  We recognized quite a few of the other actors from the various events.  We were supposed to go to those awards this year [we went in 1984 when it was at the Waldorf Astoria] but maybe next year, we'll make it.  We were going to go with a few couples and a limo and have a big day of it; maybe sleep over.  For crying out loud.

 

It would be so easy just to lay on the sofa and sleep so I  really forced myself to get to the wedding Saturday. 

 

5-22-02

 

That was a lovely compliment saying how you could get used to the life here.  And you only saw one tiny aspect of it.  The activities here are like no other place we lived. To wake up and be able to walk by the ocean or ride a bike up on the boardwalk is about as good as life can get, to us.  We are counting the days till we can return to that life.

 

I have been out of it somewhat, on pain killers due to the esophagitis. I never took one in the hospital or after I got home.  And now I need them.  I never imagined it'd be like this. .  But when you need it, codeine is a good thing.

 

 Thank you for thinking of me and praying.  As you'll see below, the prayers do help.  Even if it seems like a small thing, it is major for me at this time. 

 

I am up to short short visits when I am not falling into a stupor.  As the treatments increase, I sleep more and more and they expect it to get worse. I can't even will myself to get up at times.  My body is fighting to repair the cellular damage, the drs. told me [and I am anemic].    Eating out is limited to a milkshake or ice cream sundae if you want to meet at a dairy bar or on the boardwalk at Kohr's.  I like to do very short walks because the fresh air feels good ---then I need to go to go home to sleep to recoup.   This is like a foreign life for me.  I would never have imagined it. Sometimes I feel like it isn't even me and it is someone else.

 

5-23-02            [22/15]

 

Thank you for your continued email; I appreciate it more than you'd know.  Having the inbox full, and my fingers busy typing answers to people is good therapy, and keeps my mind somewhat off of the pain, for which I am grateful for any reprieve. 

 

Today the social worker stopped me to talk to see how I am faring [remember - her father was my Temple professor].  She was so sweet and sincerely caring about my ordeal.  Everyone there is  nice so at least that part of it, makes it easier, but it is still going in there and laying down and getting the actual radiation that upsets me.

 

As the treatments increase, I sleep more and more when I get home, and they expect it to get worse. I can't even carry on my regular cleaning or cooking anymore.  This is like a foreign life for me.  I would never have imagined it. Sometimes I feel like it isn't even me and it is someone else. Very surreal.  Must be partly the pain killers.  But if I have to sleep for 3 more weeks, so be it.  Just let my esophagus heal when this is over - there's a lot of food I miss.  Today I was so tired all afternoon and night; at one point I was so dizzy, all I could do is lay still and doze to stop the room from spinning.  Life is on hold, I guess, for the next 3 weeks.  I am so tired and out of it all the time that I keep forgetting to do things, that I should or normally do.  It is frustrating... 

 

 Today before my treatment, they did about a half hour or more of scans; they use these films to direct the next set of radiation.  I told Alan, nobody would believe what I have to go thru each day.  I don't believe it.  I had to lay perfectly still on my back, the entire time, on a hard, metal table, with my head locked down.  The new mask lets me swallow, but when I was alone in the room for 15 minutes, it didn't stop me from panicking some.  The mask is so tight that my chin went into muscle spasms.  There is no amount of fantasizing one can do to  ease the situation.  You can only try not to lose it.   Then I had to get the old mask on and have the treatment.   

 

The most blessed and important thing in my life now is 3 days off this weekend.  No treatment on Monday.  I could get used to that. If it would stop my esophagus and skin from burning, just for a while, then that would be a temporary relief.

 

5-24-02            [23/14]

 

 When I got the severe esophagitis, we felt maybe we should just not leave any stone unturned and have every detail scrutinized. Since this is all new to us, it is good to hear several accounts of what should happen during the treatment period.

 

 He wouldn't change anything.   He pointed out spots where drs. have to tread carefully in these types of treatments.  For example, my spinal cord is getting some radiation and he said it is within acceptable limits.  Because of where my mass was, this can't be avoided.  So when you said the additional treatments are insurance, he pretty much said that they give you the maximum dose you can tolerate.    I am so ready to stop these enforced tanning sessions, though.  Get me off that 'rotisserie' already.  They give me two doses from the front, each day, and then the table lifts and the linear accelerator rotates underneath so I get one dose thru the back.  So my skin is burnt in the front and the back.

 

Like you, I don't think support groups are in my future.   They would only upset me, I can tell.  We were just sitting in the radiation oncology lounge and 2 other breast cancer patients struck up a conversation.  I did not want to get involved and sat sideways and tried not to make eye or ear contact.  The one patient was saying some comments that totally un-nerved me and she was upsetting the other lady. Just because people have been thru 'it' doesn't necessarily mean they can talk about their experiences neutrally, so as to help others.

 

This has been a learning experience.  I never knew what to say to people that had something catastrophic dumped in their lap.  Now, I see that you can honestly say the least possible so as not to make them upset or nervous.    We have noticed that people who have had cancer are usually the quietest and least pushy about what you should do.  99% of the people we know have been wonderful but there are quite a few that have said the stupidest things.  We know they mean well, but they aren't speaking with any knowledge or armed with the research we have done.  So we just chalk it off.

 

 We are learning to turn off these people, quickly.  You are right - we are lucky to have phenomenal husbands.  They become everything to us, as if they weren't already. 

 

Thank you for putting me in your prayer group. We had put you in ours, also, some time ago when Marcie first told us. 

 

I  wish that I had some magic that would make all your problems vanish.  Fingers crossed.  Prayer in heart.

Barbara

 

5-25-02

 

You do come up with the greatest lines ---well done.  You have been there for me every day and you know how I appreciate it.  You are never to busy to drop me a line.  

 

I remember the radiation oncologist telling us that my dose will be about 6000 centigrays, divided up among the 7 weeks.  The cancer cells don't start to die until 45oo centigrays.  So we figure that is about day number 26. If I did the math right.  They have to be geniuses to figure this out.

 

We are trying to keep my weight constant.  It takes the whole day to deal with this.  The radiation oncologists have their own nutritionist there for us every day and they watch over all the patients carefully. It is very organized - logs, etc. 

 

Tomorrow morning we have that brunch around the corner from our house. Every year this neighbor  invites the whole neighborhood, hires the mummers, closes off the street, gets a Jack n' Jill ice cream truck, etc.   I will get my food and move far away from the throngs. What am I talking about? Will I even be able to find any food that I can eat. Well, at least I can get ice cream. It is a real happening and I don't want to miss it; hundreds of people go from Margate and Longport.  So that will be my outing for the day. I look forward to it every year.

 

A friend stopped by today with her husband; she had Hodgkin's 15 years ago.  She was telling us about her surgeries and chemo and a lot of the baggage she went through [like with people and finding out who your real friends are at a time like this].  It was helpful being with someone in person, for a short while, who's been thru it. 

 

I am starting to get a little less tolerant of people.  Maybe you can help
along these lines and tell me if what I am feeling is normal. There are some
people that used to email and stopped; I guess I expected too much from some
people.  After 3 weeks of no email from this one lady, she wrote how tired
she's been and so busy going to the new Kimmel Center , this show and that
show, her mah jongg games and blah blah blah.  This is the first time I
started feeling sorry for myself.  For 3 months my life - as I knew it -
disappeared and I can't do one thing I like.  And she dared complain how she
is too tired to get to the computer to send me an email.  She has no idea
what tired means. Thank goodness I don't have to depend on her for anything else.

I remember when my mother needed radiation treatments back in 1972 and her
friends each took her a different day.  I don't expect that much but it would have been nice if someone [once in a while] offered to take me and give Alan a break every so often. We know someone who just sits and reads the  paper all morning and then goes out shopping.  Every day.

Before the surgery people said they wish they could do something.  Now I can think of a lot. But they are busy with their own lives. Here's an example. _____is so self-immersed, it makes me sick.  All day she has fun - from one activity to another [games,  walking , biking, lunch out, dinner.]  No work.   I don't begrudge her but she doesn't think for one minute  she could help. With one email.

  But ______ has this thing that she won't use the computer.  Except she told someone she playsgames on it.  That's when I couldn't understand anymore.

Yesterday was the worst; we had been up to Hahneman and then on the way back over to the hospital for my date with the linear accelerator.  Everyone was at the beach - first day since last year.  We wanted to go but it was too much for Alan to haul.  We were exhausted from all the driving,, etc. Especially dragging chairs  7 blocks to THEIR beach.  So today,  somehow we managed to get it all down the street to OUR own beach.  A few people stopped by to say hello to me  and some people helped get all our chairs and umbrella  back to our house; that was a blessing.  We couldn't go yesterday because we couldn't manage all the stuff.  I am useless now. So those few people today restored our faith.  But it is always a surprise who comes thru and who does nothing.

So any advice you have, will help.

 

5-27-02

 

We tried to get on the rare disease site and couldn't find it.  But anyway, congratulations - it must have gotten on due to your persistence.  But if thymic cancer is extremely rare, then ECTOPIC thymic cancer is even more extremely rare.

 

Speaking of which, that old guy came up to me at the brunch to wish me well. He said, "We know someone with the same thing as you."  So I had to retort "No you don't - this is very rare and only 20 people in the world have it now." Aren't people amazing when they haven't done their homework.  Leaning tower of pompASSes.

 

The brunch took our mind off of things for awhile.  It was nice seeing people we haven't seen since September.  I managed to get down a half of bagel, half a mini cherry Danish and a whole Jack and Jill chocolate covered vanilla ice cream bar.  It took two hours.  My voice was totally gone; otherwise I'd have called you this weekend.  All I can do is an occasional whisper.  Yet people still came over to me and started conversations.  I had people sitting to my left and right that would answer.  People can't handle it when you can't talk; they still keep asking questions. After the mummer's played, we walked home. The costumes are  beautiful and so elaborately made.

 

I don't like being fried chicken, at all.

 

I got your drift about the calcium.  The codeine painkiller I am taking does the same thing but I need the codeine at this point.  It is a no-win situation.

 

Get ready to be spooked bigtime.  What an ironic thing that you mentioned eggplant parm.  We got a call at dinnertime from a neighbor on the next block.  She had made extra eggplant parm. and sent her husband to deliver it to us!!!!!!  And she packed a big salad up with dressing.  We were so touched.

 

You always make me think.  Yes, I have 'rugged terrain' and the al quaeda will be dead meat on it.  I can't wait for this theater of war to draw the final curtain and close.

 

Someone told me that the jerks that are scarce probably are afraid of illness; if that is so, it seems a little lame.  Because everyone will go thru it sooner or later [either themselves or someone in their family] so they better get a handle on it. 

 

I found an article that I will send you separately.  We found it on the
Johns Hopkins site and it reinforces how good we feel about me not getting
chemo WITH the radiation.  The dr. that did the research concurs that the side effects of this
one particular chemo [cisplatin] is so strong, that in many cases, the
patients stop the chemo because they can't take it with the radiation , or a few died, it was so
toxic.

Did your eyelashes and brows grow back?    Your hair is as lovely as it was
before.  The hair you don't want to lose, flies off of us but the hair you
could stand to lose, sticks like glue [Gail Goldsmith said her 'moustache'
is still there].  I like the idea of those beanie hats. Did you get one?  I
haven't seen them down here but next time we are up, we'll look.  I doubt
they have brims, though, do they?  I need a large brim to shade my neck
these days.

 

I loved having 3 days off; I didn't feel all that great because of the
cumulative affect of the radiation. .  But it felt good to do something 'normal.'

 

5-28-02            [24/13]

 

The numbers ABOVE, in the subject area, changed; the radiation therapist told me today that they added more treatments to my plan.  That took the bottom out of my fastidious counting every day.

 

And please remember that you and Rich get straight A's since you have done more than a 100 people so stop writing silly things, like you'd like to do more. What the 2 of you have done during this has been so touching.  Just Rich's expertise and being [as he calls it ---and it is a great term] my ambassador has been so calming and helpful to our emotional well-being.  Save your energy for this.  Knowing he is there to bounce things off of has been a life-saver, literally.  And when we tell people how you offered your condo, their mouths drop open.  That was the most generous thing anyone did.  Even your short visit was perfect and appreciated more than some people's loooooong one.