May 29 to June 16, 2002

 

5-29-02

 

Thanks for all your thoughts.  If ______ is  are afraid of illness, {I do understand your theory} 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. And learn what to do. She will be a basket case.  You know, her mother has ovarian cancer and emails me.  Her mother is very hurt that when she had her surgery ______ did not visit her once, take her to or from the hospital, or in any way help out afterwards

 

Your email telling me normal details has a much different [and better ] tone, than ______'s.    And the fact is, you haven't dropped out of emailing me.  I guess I objected to her use of the word 'tired',  for an excuse not to email me. She'll never know TIRED.   For me, there has to be a better word.   Tired doesn't fit ---it is an understatement.

 

For her tired is going to concerts, mah jong, dinner, etc.  If I use the same word, people don't get the depth of what I feel.   We are looking for a wagon to cart chairs to the beach - thanks...good idea.  All Boscov's had was metal; we are going for plastic [no rust]. 

 

The house is clean; I don't need a cleaning person.  Alan and I are managing.  The rituals have been scrubbed ------pardon the pun.  Well, it was 2/3's of a pun [P.U.].

 

It is ironic that in the middle of this mind blast with friends and what they do or don't, 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, especially in light of how I was feeling. A small town is very nice. She included a card from a church system where they are lighting a candle for me. The way my mind works is if strangers can be this nice and thoughtful, what happened to those who profess to be our best friends.

 

You'll be happy to hear that the new mask is so humane I told the dr. today.  It makes the actual treatment less frightening. I was in a better mood before hand and joked for the first time with the dr.  A little bit of Sliding Billy Watson came back [my vaudevillian great-grandfather ---you know about him].

I told the radiation oncologist I have marketing idea.  Maybe I'll  just take a steak into the room with me, put it on my neck and they can cook my lunch so it is ready when I am done.  They are pretty serious most of the time since the majority of patients have oppressive problems.  But he laughed and said he thinks I am so funny. Back to entertaining the masses.

When we showed the article to our radiation oncologists, they said  it talks about patients that are much different than me so it does not pertain to me in so many ways. They said we should be very encouraged because of the Pet scan results, the job the surgeon did, and the fact that they COULD operate on it and get it out.  The cases in the article, many of the patients had inoperable masses so they are in a different class altogether.  So you are right and didn't misunderstand - I am  in  a RARE category.

 

The esophagitis is still severe enough to stay on the codeine.  I am not losing much weight since I turned from my low fat, low cholesterol diet to the opposite [my cholesterol was 398 and no one could give a damn at this point].   They are glad I am eating, even if it is less volume but higher calories.

 

 He checked out my skin [which is stinging, crawling and red] and he stayed in the room for the set-up.  It makes the actual treatment less frightening.   The new treatment plan must be a longer dose because I have been sleeping much more [which I couldn't even imagine before - they did say it would get worse but I never believed it].  It is like having all that anesthesia for surgery and how you feel when they wake you up---but you  don't wake up. And it is like you overdosed on pain killers or muscle relaxers, severe exhaustion. We need a new word; tired is an understatement.

 

Wed. is my worst day - time wise - since I go for physical therapy before they radiate me.  So we were hopping fast to get out of the house and it takes me so long these days.  When this is over, it will be nice to get my voice back and be able to gab with you, like old times.  Sometimes I am less hoarse than others.

 

Someday, we will have to write a book.  We are keeping a file box with file folders [which is full already, by the way].  And we have a file in the computer that is almost 100 pages, so it is like a book is almost done
already.

Tell me if you went thru this. When people say, 'how can I help', now I have lots of suggestions.  Before there was absolutely nothing I could think of.  And it is all such small things but people don't think about.

 

Today it was back to the treatments again; I can't remember not ever having a time in my life without them.  I am trying not to get depressed but at times, it just is there.  But it was 'dr. day' at the old hospital and the one we saw was very positive.  We brought him articles Alan found on ectopic thymic carcinoma and he told us they don't resemble what I have even.  The patients highlighted in the case studies, many of them, had inoperable tumors, or else they add other differences that make their case scenarios different than mine.  We like him. He told us not to look at the percentages given for prognosis. So we left feeling good.

 

We have received more help from total strangers than supposedly good friends. Last week it started to get to me; I felt sorry that my life and body were robbed from me.  Everyone is going about having a blast here and I am out of it and sleeping on the sofa.

 

5-30-02

 

Anyway, thank goodness for the entertainment world - they keep me looking
ahead.  We just got an email from my favorite daytime star Cameron Matheson, and he
and "David Hayward" [Vincent Irrizarry -  from 'all my children,'  too] are
coming to the shore to play golf and want to have lunch with us.  When Alan
showed this to me, you can imagine my reaction. We need to coordinate our
dance cards now for a date.   Did I tell you he called Alan last week and they talked an
hour [I was too hoarse to talk to him,can you imagine.]

 

Did I tell you I told off a lady on the beach.  After the last few weeks, I
only had ONE nerve left in my body and she stepped on it Monday.  I wigged
out.  Everyone has either called us or sent a note or email, except 3 people
we know well.   It really bothered me how cold this was when almost
strangers showed me more caring.

So this  Shirley walked up to me on the beach and said she hopes I'm
feeling ok.  I said, "Well how would you be feeling if YOU had cancer?"  She
said some things about hearing about it and wishing me well.  So I said, "It
would have been nice to hear this from you much sooner."  So she said,
"Well, I haven't been to the shore."  Like she didn't know that is why God
invented Hallmark or the telephone [Heaven forbid she should spend a
quarter - she is very very rich - to call me or Alan].  So I said, "Oh, was
your finger broken." ]referring to her dialing finger].  Maybe I overreacted
some but I had had it.

Aren't we both in a ranting mood.  EEEEEEEEEEEEEEEOOOOOOOOOOOOWWWWWWWWWWW
It must be they are hitting my spinal cord some.

frayed-nerves-Barb

6-1-02

 

Cute joke.  And I like your driving instructor's mantra ---it is so hard to
do , though, at times.  I had to see the dr. today to have my skin checked
out.  It is painfully red, unlike any sunburn I ever had.  It is hard to
explain how it feels but it would all be adjectives that invoke pictures of
great discomfort. He gave me 2 prescriptions; one to use immediately.  It is
a higher dose cortisone cream [better than the over the counter ones I've
been using].  The other one is to use if the skin starts to break or form
blisters - it is constant visits to the pharmacy.  They know me real well
now and asked Alan a lot of questions today and gave him candy to take to
me. It is nice to be distinguished from the hoards of summer visitors here
but not in this way.

So we traded an uncomfortable mask for 5 minutes for being uncomfortable in
my skin 24 hours. There is no winning in this thing called 'life.'

Yesterday Alan spoke to J. Eddie Peck, he plays Dr. Jake Martin, Jr. on
"All My Children." He  is the one we took the carriage ride with in January.  He
played on Dallas and Dynasty.  Anyway, he said he wants to come down one day
to visit.  This is all too amazing.   It is hard to grasp - imagine your
favorite TV show and star wanting to hang out with you.  I feel like one of
those Make A Wish Kids that gets terminal and has a wish granted.  Just
watch it once sometime so you can see what he looks like.  And Vincent
Irrizarry is Dr. Hayward.

Now get this. This is like a dream in the middle of a nightmare.  Even more
amazing is he wants a copy of Alan's novel and an extra one to give to his
castmate, Kelly Ripa, who just started a book club [Oprah's is over and done
with].  If she would review it on their show, that would be unbelievable, so
that is something to really look forward to.  We hear the first book she
reviewed,  was propelled to number 3 on the best seller list.  We are trying
not to count our chickens................

The other thing  here this weekend, is my friend [and also kickboxing
instructor at the fitness center] is  performing at the top of the Trop
again and invited us all again to be in the audience. We all did this in the
winter when she performed [sings ---and she wears Bob Mackie gowns] and we
are planning to go Sunday evening, because that is the day  I have the
chance of being more alert and less inflamed and in pain.   FREE.
There is always something going on down here.

Speaking of which, I was too deeply fatigued to make any effort to go see
Howard Stern today.  You know, I must be ill not to 'chase' a star that I
follow.  I have waited years for him to come here and it had to be now.

Before my treatment today, we went to the gym and took some of the aerobox
class we used to always do on Fridays.  It is 1 1/2 hours and I did about 20
minutes.  And felt it.  But I was tired enough for my mask so that was good.
Here is a coinkydink.  The lady whose appointment for the linear accelerator
after me is an ovarian cancer patient Florence Staller, daughter is Beth
Porter. She just started talking to us one day and she said she is from
Welsh and the Blvd. in Philadelphia, originally.  Her daughter belonged to  Nancy 's
synagogue.  She has been battling her cancer for 4 years - chemo, etc. Such
suffering. And bravery.  She is amazing though and looks great and is a
lovely person.  So I told Nancy and she said Beth was Adam's Hebrew school
teacher and is a beautiful person inside and out.  It is nice to meet a nice
family.

We had to wait a long time to see the dr. today - lots of emergencias, I
guess. They were bringing people in on stretchers.  Anyway, we got out at
noon and hadn't eaten so we went to the closest and the quickest ---Burger
King.  I love forbidden food.

badly-burnt-up-barbs

 

Though I am not enjoying it too much; my skin won't let up from itching and burning.  It is constant now. The creams don't do anything.  It is driving me crazy at times.  I try using a paintbrush to touch it.  And we think we see little blisters forming; we have no idea what would happen with the treatment schedule if they are really what they look like.

 

Regarding Burger King; I told Alan afterwards I am cured of Whoppers.  That is why they tell you not to eat your favorite foods during this time - it is so painful that you never want them again. This is sucking out loud.

 

We tried to go to the beach awhile to sit with the people we know; thought it would be a good diversion for both of us.  But people were getting on my nerves.  First I can not talk - I am so hoarse [giddy up].  SO these clods sit there and our other friends say to them not to make me talk but they ask question after question.  One guy said how many treatments do I have left and I rasped out 10.  SO he says "10 weeks or 10 days."  What an idiot.  He's been emailing and calling so does he listen.  When I mouthed days he said, "Oh, that's not so bad."  I lost it and said "for you - you aren't enduring them and I hope you never find out what it is like."

 

Some other guy [a Ph.D.] asked me how my energy level is.  Now you would think any intelligent person would know that any cancer treatment is aimed at killing all your cells and therefore you are almost dead.  At least dead tired.  I told Alan to take me home. 

 

Thanks for the ice cube idea; I can't use them for real, they said, so that is a good 2nd imagery routine.

 

Here is a coinkydink. We were just watching the news and my radiation oncologist was on it at a dinner at one of the casinos, getting an award for his work in cancer.

 

We hear it was hot there today, from some people that drove down.   What did you do - stay in and out of the garden to stay cool.

 

...but I am burnt to a crisp and hope we can continue.  They prescribed some
of the stronger RX's today.  My neck is painful from the burns. SO that
makes each day seem like an eternity.  Every minute the stinging is there.
They examine me every day very carefully.   So we trade a comfortable mask
for something else.  In 30 years, this treatment will be barbaric, we are
certain.

 

Hopefully, by the time you come down for the summer, I should be done the treatments, unless they have to make me stop for a while.  But there are 10 to go and  it was nice of you to say that.  I wasn't even thinking of you; I was thinking of some people who live here full time.

 

You will be fine; I found out I am getting 3 times the dose the breast cancer patients get.  There was an 80 year old lady who had the appointment before me each day [for breast cancer] and she had no effects.  She was just amazing. Then there is a 70 year old lady whose appointment for the linear accelerator after me, & has been battling her cancer for 4 years - chemo, etc.  She is amazing though and looks great.  These  older women handle it all better than me and have good outlooks.
  So maybe I should take a lesson from them. I was so happy to hear your hair is growing back - a good sign that your body is repairing itself.  Mainly, though for the reason that maybe before the bad heat hits, you won't need your wig.  Hats and wigs are so hot in the summer.  I started carrying an umbrella in the sun because the hat hurts where my head is burnt. You wind up not caring about looks or scars and hair.  You just want to be comfortable in your own body again and feel safe that you are healthy.  People don't get it.  I started going bananas on people that stand there and tell me how great I look.  Once is ok but some just stand there, over and over, saying I look good ---what did they expect, a corpse.   I used to joke [expensive make-up, etc.] but now I say I feel like shit. Then they exclaim how they cant' see my scar.  Like at this point, I tell them, it doesn't matter.  They go on and on how lucky I am the dr. concealed it.  Duh.  So dense; so stupid. You just want the cancer cells OUT.

 

Reminding me... my friend writes me everyday some good analogies.  First, remember she tells me, what the cancer cells have done to me  SO THEY DESERVE TO DIE!  She said to remember that I am NOT the cancer ------I have it BUT IT DOESN'T HAVE ME!  And that the cancer cells DESERVE THE DEATH PENALTY BIG TIME.  Someone else wrote that it is tough getting to the top of the mountain but when I get there I will have new knowledge.  Which is so true, I can tell already.  At least WHAT not to say to people if it strikes them.

 

6-2-02 [27/10]

 

______ has her moments.  Sometimes she can be nice [but I see, it has to be convenient].  Like today on the beach [We tried to go to the beach awhile to sit with the people we know].  Anyway she held my rain umbrella over me while Alan got the big one up over my chair.  I can have no sun on my radiated area.  Then when people tried to hug me she told them to refrain - my voice is gone again.  And then she would tell my stories for me, at times, when people asked questions.  But I wasn't interfering with her mah jong game, so it was easy.  Oh well, I'll take what I can get.  Accepting all crumbs.

 

Adam is dealing with it.  It takes a while. He has his moments. But unfortunately, he started smoking [nerves I guess].

 

When we asked what he wanted for his birthday, he said, "For my aunt to get well."  Suddenly mature. Always the sweetie pie.

 

People are making me so testy.  This one stereotypical wife of a dr. , keeps telling me how she can't find my scar [a new game, perchance?].  I finally had to tell her that I wind up not caring about looks or scars and hair.  

 

My new motto "EAT WHILE YE MAY"  because tomorrow ye may have to fast.  It is odd because I get so hungry but just can't swallow, after a few mouthfuls.  And food tastes good - it drives me nuts.

 

We didn't go to the beach today; mainly it was too windy.  It we had gone, we would not have gone to the beach where everyone sits but to the one at the end of our street. Much quieter there with no stupid comments.

 

So we felt stable enough to try to go out a little bit.  Our friend Lorry performed at the top of the Trop tonight so we met other couples there.  Lorry wore a short dress this time - beaded heavily and the hem had
long rows of beads hanging down.   As you know the view is beautiful from there but we could only stay an hour; I got so tired and headachy.  But what we heard was very good; she is so talented. The table next to us was a nice couple from Atlantic City [she earned a Ph.D. at Temple and has a book club here].  She wants Alan to be a guest speaker.

This weekend was not good between the constant burn in my esophagus and now the skin tormenting me. The drs. say it could take months to return to normal since it took months to get this way.  I need a magic wand.

My friend Dolores called and she is back from Florida so that is great. She has such goood ideas for me. And the neighbor that brought us the eggplant parm last week is now our meals on wheels.  She dropped off
meatballs and macaroni and garlic bread today.  She is spoiling me rotten.What a lady.

  6-3-02
---as Alan says, at least it is single digits now, even though it seems like eternity since I am in so much distress. .   I am burnt to a crisp and hope we can continue.  They prescribed some of the stronger RX's .This weekend was not good between the constant burning pain in my esophagus and now the skin tormenting me. It is a sickly purple-red.  The drs. say it could take months to return to normal since it took months to get this way.  I need a magic wand.

There are no breaks - you go EVERY weekday straight.  I met someone yesterday who thought it was once a week. Cancer cells don't die that way, unfortunately.

 

We have tried to get to the beach, which is tough with the gear since I can't help much and once I am there, I am almost sorry and can't wait to go back.  Some people have no common sense. You'll LOVE this one, I was sitting across from this other stereotypical physician's wife and for 45 minutes, non-stop, she kept complaining to me about her nails chipping and breaking. And what should she do and how this hasn't happened before.  I said a few nothings but wanted to say, "Hey bastard, you want to trade ?"  So we will probably spend more time on our own 34th ave. beach from now on.

 

For that reason alone, we are staying away from people; we both want no touching, at this point.  I can't get sick; Alan could technically pass on other people's germs to me so he isn't even shaking hands, to be on the safe side.  Some cancer patients wear a mask. But so far, I am staying out of crowds.

 

Regarding your co-worker getting 'the mask;'  smart not mentioning my ordeal - why scare the poor guy.  But if you want to you could tell him to try a dry run.  I wish they had done that with me - you know, visit the room for the treatment, show me the different instruments, show me where they monitor me, and how the mask is put on and secured.  I told the radiation oncology social worker this in case they have staff meetings - use it as a patient suggestion.  It would have helped a lot.

 

 But the side affects worsen with each one.  Today we had to have my skin checked out.  It is painfully purplish-red, unlike any sunburn I ever had.   I guess you became fast friends with your local pharmacist too.

The creams don't do anything.  It is driving me crazy at times. 

 

It gets worse as we go along since it is accumulative, the drs. say. That is why I can't even look ahead because the worse is yet to come and I can't even deal with today. The radiation oncologist told us that my dose will be about 6000 to 6660 centigrays, divided up among the 7 weeks. But he ADDED more days to my dose so all my careful counting is out the winder.  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.

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.

 I loved having 3 days off for Memorial Day; I didn't feel all that great because of the cumulative affect of the radiation.   But it felt good to not get worse for a few days and to do something that are 'normal.'   I'd call but I really have no voice ------the more they fry me, the more the vocal cords are shot.  I can barely whisper without it hurting.  So email is my lifeline these days.

 

 Socially, I do things in very small, short doses.  So we will see you for sure.  Since this is all new to me, I have no idea what the future holds for my health.  At least my treatments will be done by the time you come down but the side affects will be lingering.  They said it takes as long for them to disappear as it took for them to come about.  It could be up to 6 months. And then there are problems that may develop later [that I try not to think about].

 

 The doctors examine my skin every day because if there is any break in it, as they say, I will have to 'take a rest.'  I hope not; I want next week to be my last week [I LOVE saying that] and get this over with already.  We don't want anything to happen to extend the time and this horrible countdown.Those cancer cells  deserve the DEATH PENALTY [your words] with no stay of execution.  DO your magic so I can finish.  These  last days are the most critical when the side effects are at their severest. 

 

I am on dozens of topicals for the burns, and still trying even more formulations at this point.   When I go in for the treatment I look so slicked up that I am afraid as the rays hit me I will be set on fire, like a grease fire in a pan.   And that is how my skin feels.

 

Glad you enjoyed the muffins.  Life is too short.  I only wish I could down some of that food.  I want a juicy steak sandwich with fried onions.  I almost have no appetite and they noticed this last week I lost weight so today they called in the dietician / nutritionist to counsel me.  Had to stay 'after school' - DETENTIONS

 

My friend Dolores called [the one who was engaged 35 years] and she is back from Florida so that is great.   She said she felt so bad she hadn't been here during the last few months but now she is committed to doing anything we need.  She has such good ideas for helping.

 

We are starting to get some benefits statements from the health insurance and the bills are staggering.  But so far, it is all covered - - - like the $17,000.00 bill for my hospital room. There was a $37000.00 bill for the 9 hours I used in the O.R. There was over $11,000.00 for the lab tests.  The surgeon's charges are separate.  The first radiology bill came for the first week, totaling $14,000.00.  What big business.  At least we are helping the economy.

 

6-4-02

 

It would have been great to talk to you tonight but I have no voice; they
fried it up good.   It better come back  That area has been thru a lot the
last months.  It is frustrating to not be able to keep in touch with people.

It was a shame about your blood pressure and the reaction to the chemo. Can
they give you something to help next time - if I hadn't done the exercise
first, they would have given me tranquilizers but going to the gym first did
tire me out so I got there in a calmer state.  I try at all rates not to
take more RX's.

 

Anyway, the doctors gave me some advice today.  Unfortunately, unless it is cloudy,  I won't be going to the beach till at LEAST this is over.  The doctors said I can't take any chances at all and have to protect my neck and my immune system, from everything [sand, winds, etc.] so it doesn't 'break.'   So if I am awake, we'll be sitting on our patio in the afternoons, if you walk by.

 
Thanks for the note. At least it is single digits now with only 8 treatments to go. Unfortunately, these are the worse 8 because the side effects are cumulative. The last week has been really bad for Barbara, her skin is really burnt, she's having trouble eating, and is choking a lot. If she starts to blister they may have her take some time off before finishing, and she really wants to just get it over with. She's doing remarkably well considering what she's going through, but it has really reached a bad level.  We get some conflicting info from them about how careful she should be of the sun. The nurse there said she should stay covered, with something always around her neck. If that's the case, she probably won't be going to the beach because it really hurts her to have material on her neck.
 Another person there said just to have something shading her from the sun, but we hope to get this worked out.  Other than that, she's very tired most of the time and must do everything in small amounts.Hopefully, we'll see you guys on the beach...

 

Alan

 

6-5-02


 Thank you both for your concern.  Your caring and encouragement really means so much.    Can you believe all this, from a simple "feeling" in my throat 
 that ranged from aches [which I thought were muscular from sit-ups] to inside my throat, there was a sensation.  It was as if I swallowed a pill, and the impression is still there.   Dr. Anastasi [at Ventnor and Jefferson] ordered a barium swallow test - he was good and a very sharp diagnostician. The preliminary  diagnosis  was a hiatal hernia  and a 'goiter.' That would have been nice.

 

Had I ever told you that my mother, in her early 30's, had a growth that wrapped around her wind pipe [I was too young to know details, but if it weren't removed it would have strangled her.  This mass that I had brought back memories - is really compressed my windpipe and could have strangled me if left untouched .  But the drs. all say that my cancer is too rare for it too have been my mother's problem too.  Very bizarre.

 

We are just hanging in there.  And instead of hitting my head against the wall and asking why this is happening to me I am asking, why have I been watching my cholesterol so carefully for almost 2 decades.  What a waste!  I may not have gotten my father's genes, but my mother's.  What a screwy turnaround.  All the donuts and ice cream sundaes I could have had......      there is a lesson in there for us to learn.

 

They tell us that the end of treatment is always the worst because you become  so debilitated in one way or another.  The good news is that the cancer is  feeling pretty sick too by that time and hopefully has been sent packing!  That was good of you to think of the finish line idea. 

 

It is easy to envision the al quaeda getting zapped during the treatment.  I don't know if I told you but the linear accelerator makes a noise that is loud and constant, like a zapping. I keep my eyes closed and send the rays to the evil cells.  Alan can hear the sounds from the waiting room. It is a distinctive sound and I know my dose by heart; there are loud beeping tones that signify the machine going on and off. 

 

So far we are managing without asking others to do errands for us but it is nice to know if I need them, they are there.  I am forcing myself; today after sleeping 4 hours when we got back from the hospital, we took a ride to pick up some new esophagus and skin RX's and made a quick stop at Shoprite.  It was tough but I really wanted to do it.

 

After my PINK SLIP - DETENTIONS yesterday for losing weight, I am trying harder today.  It is just too painful to swallow.  I need to drink more water but can't get it down.

 

A few people have mentioned making up pre-written cards for when people talk to me and I have no voice.  But I won't be going to the beach till at LEAST this is over.  The doctors said I'd have to cover my neck so the sand won't reflect UP the rays.  I can't cover my neck - any cloth is excruciating on it so I am destined to stay in my cave.  Maybe an indoor nudist colony would be good.

 

The soufflé  actually hurt as I swallowed it and was harder to get down than pasta; this is so difficult to figure out and get down pat.  We just go with the flow.  I made a flan a few weeks ago and that hurt too, but soft mushy chocolate cake slid down.  Go figure.  There's no rhyme or reason.  I used to love junket as a kid too.

It is harder when it is someone else and not yourself.  We have felt that way when we hear people we know are going thru something [it is probably a combination of guilt and relief].   I was sad to read you were scared. For me, I feel like I am on one of those moving sidewalks and I just keep going and letting them do to me what they may at various check points. I told the drs. last week that sometimes I don't even feel like it is me.  I am 'outside ' my body, watching.  They said I should try to stay there to get through this.  Don't get me wrong, I am miserable and in pain, but maybe the codeine induces this protective state for me at times.  I just want to 'get off that moving sidewalk' and get my life back.

 

My voice goes in and out [more out than in]; for 4 days I had none whatsoever and then I sneezed today and it came back in.  Can't explain that one at all.

 

Today I was speaking to our neighbor out back and he has bladder cancer.  The neighbor across the street from me, her mother has mouth cancer.  And across the street from her, the man was up to PHila. for major surgery the same week as me. One man on my st. has prostate cancer.  Across from him [on my side] a new neighbor has some form of cancer. Oops - just heard he died [from N.E. phila.]   Maybe we will drink only bottled water now, in case it is in the water

 

6-6-02

 

It happened.  Stop the hourglass.  The doctor took one look at my neck today and told me  we have to stop for a while since my skin 'broke.'  There is new skin underneath coming up that they don't want to burn.  So tomorrow and Monday, I am a no-show and Tuesday they will re-evaluate me.  I am bummed out because in my mind I was saying  "Next week at this time there will be one left.'

Every minute is a torture [that I really want over with - I am losing my patience] because my skin reminds me constantly that it is burnt; and my esophagus will stay this way too until it is over and receives no more rays.
ON top of this, they told me I have to stay in [the new skin is too delicate] during the day and since my voice is so bad ---I can't talk. Solitary confinement.   No beach for some time now, even with umbrellas [plural].  Alan is a doll, doing as much as he possibly can.

 

No, I am not able to go out for lunch  at this point so the 'guys' know we are waiting for this all to end. The white count was the lower level of normal.  I am TOO careful normally but now I am even more so ---driving Alan to distraction.  I don't even like people to touch him or shake his hands because he could transfer something to me.

Yes, we told the dr. about the ball, among other things.  They are writing up an article for a medical journal on me, since this is so rare, and they are constantly picking my brain.  My whole life I have been exposed to noxious substances , we realized.  As a child, my father smoked 3 packs of camels so the 2nd hand  smoke plus dry cleaning fluid from his business probably didn't do me any good.  As a med tech, I breathed benzene compounds, took blood without gloves [the '60's], and had to mop up a formaldehyde spill at Frankford H.S. because the principal wouldn't call the fire department. Then at PCP & S, we had to use a radioactive area for our office and lab.

 It took Temple so long to identify my cancer because  of the type of malignancy it is.  It seems as if I have what they call an extraordinarily very rare cancer; he said one person per continent per year gets it.  Isn't this swell?  It is called Ectopic Thymic Tissue Carcinoma.

 When we are fetuses our bodies  have a lot of tissues that have to differentiate into various structures.  One of these is thymus tissue, a gland in the lower neck.  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 upper neck area.  That is what ectopic means. That would be ok if it stayed benign; many people have the tissue stuck up there.  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.  At one point when we were getting other opinions, we went to an oncologist at Hahneman. He asked me  if I had any 'normal' symptoms.  He thinks some of the  affects I have been feeling are related.   All so typical of me.  And he said it is 'a weird cancer - A Barbie cancer.

 

All the drs. were extremely thorough.  Before the surgery, they did a triple endoscopy which is very frightening.  They go up to your sinuses, down your throat, and one other area.  They are looking for cancer cells  [which they didn't find] because they wanted to see where  this  originated; that's a person's best chance of treatment if they find the origin. And Temple did.

 

At least it is single digits now with only 6 treatments to go. Unfortunately, these are the worse 6 because the side effects are cumulative. The last week has been really bad for Barbara, her skin is really burnt, she's having trouble eating, and is choking a lot. In fact, they looked at her today and told her she needed some time off to heal. Her neck is so bad that they want her to take a long weekend and come back on Tuesday to be checked again to see if she can continue. She's upset because she really wanted to get it over with, but she is also very scared of the effects. They also told her not to go out in the sun at all because they are afraid it will make the burn worse. I'll keep you informed...

 

Thanks

Alan

6-7-02

To answer your question, cone down in radiology-speak means they close in on the suspicious area and radiate that area a little extra while some of the other areas they started with originally, they don't do any more. On one hand it good, because one side of my neck is out the radiation field now and can start to heal.  On the other hand, the one area where I had surgery is getting pounded with even more beams and that has become the problem - - - it has not had a break and is starting to scale. They tell us,   that the end of treatment is always the worst because you become  so debilitated in one way or another.  The good news is that the cancer is  feeling pretty sick too by that time and hopefully has been sent packing!  This has been some learning experience, all along the way.  We thought the surgery would be the problem and the radiation would be easy.  How wrong we were.

I haven't emailed much; just can't get uncomfortable.  It pains me to swallow anything [water, saliva, ice cream]

 

Even though you write of 'quiet' happenings in your life [like cleaning furniture and moving clothes], it is wonderful to read because it reminds me that hopefully I will be able to do the mundane soon.  I am jealous of anyone who can just step out and water their plants, eat without pain, and hold their head up to read a book.   But I feel lucky that they at least have some treatment for me; some other people have masses that aren't operable.  And I feel lucky that I have made it thru 31 of these 'executions.'

 

Yes, it is a rest but I hope they don't wind up adding more treatments on to
make up for possible cell growth during the lag. You know me, I worry so
much because any possible option usually hits me.

They do not want the skin covered in any way, shape or form, except with
their special creams.  In fact, if anything touches my skin, no matter how
soft the material is, it abrases it terribly.  Any fabric hurts like hell.
I tried silk and it is painful.    I am a burn victim......

People really downplay radiation;  I guess because they have not been thru
it.   Or like with some breast cancer patients, it is only a third of the
dose that I am getting so they don't get these effects.  The location in the
body can make a big difference.  I am not sleeping well at all because the
esophagus is painful all the time yet especially at night.  I try to keep
sucking ice chips but that keeps me awake.  Then for some reason, I can't
find a place for my left arm [that is the one that is sore from the blood
clot and the lymph node removal].   The other problem is my neck is so burnt
if I don't keep moving it a little, then it hurts from being so stiff.  So
if I doze and don't move,  it gets awfully painful.  

 

 Today was gray and rainy so we figured it'd be ok if  Alan took me out for a ride in the car.
We made a few stops at some of my favorite stores to stock up on a few things.  Did you ever try Rao's pasta sauce; once we got it as a gift and now we are hooked.  It is pricey but we save it for special meals.  Alan bought a container of Chai tea.  And our friend in Canada sent us a calming and serene photo of a lake so we found a frame for it at A.C. Moore [with the 40% off coupon from the Sun. paper].   We made a stop at Rita's water ice for gelati but it was too cold and hurt my throat. Go figure.  That was nice to sneak out awhile.
 I figured I only had one week to go [silly me] so then I'll get back to normal.   

6-8-02

We must be the "Job" twins and are following in each other's footsteps.  It is bizarre, isn't it, how much we have in common and how much we think alike.   First, I loved your email.  It was so enjoyable reading the little vignettes, that I re-read it a few times.  So don't call it diarrhea.  It was so much more enlightening than some of the others I get.

 

When we were deciding what treatment plan to go with, 0ne guy coldly wrote me, "I hope you get a handle on your perplexing situation" as if we are dealing with which car dealership to go to or what gym to sign up with. 

 

But like you said, we don't want to wind up in the hospital.  That happened to my mother 30 years ago [I don't know if I told you] and it ended up badly.  Supposedly they know a lot more now.  All we can do is put our trust in the health care experts and God.

 

My friend Lucille [she is a medical technologist, like I was, but she moved to the top of the profession as manager of all the labs at Jeanes hospital] wrote me today.  She had breast cancer 10 years ago and has been one of my cheerleaders.  She said  I should feel lucky that I have made it thru 31 of these 'executions'  and I have to respect my body for that.  Guess she has a point there. She  knows of what she speaks. So respect your body too, for what it has gone through.

 

You were very astute when you said how people take for granted being able to simple things.  Like going right out of the door in the sun to water plants or hold their head up long enough to read a page in a book.  I felt very sorry for myself a few weeks ago because we couldn't get to the beach.  I am not much of a help now in hauling all the items down, barely able to drag myself. I have to walk under an umbrella so that doesn't leave many hands to carry the merde. I was a bit miffed that none of the group offered to help Alan, given the circumstances; they just went down themselves and sat there and had a grand old time. We stayed home and sat on our patio.

 

 Last week this all got to me; I wanted my old life [and body] back and was feeling sorry for myself a lot.  I know you must understand and feel the same way, at times.

 

So Saturday,  somehow we made a huge effort and managed to get it all down the street to OUR own beach, here in Longport.  I guess I thought that after year after year, we paid to store our chairs all summer and walked each day to that beach to sit with everyone, that maybe during this unusual time, they'd walk down and sit with me on ours.    A few people stopped by to say hello to me and then some friends, including Marie Cohen, helped get all our chairs and umbrellas  back to our house; that was a blessing.   Anyway, they  told me you really find out who your friends are during something like this.    So those few people that helped us back, restored our faith.  But it is always a surprise who comes thru and who does nothing. 

 

 I remember when my mother needed radiation treatments back in 1972 and her friends arranged a schedule and each took her a different day. I barely got a day in myself to take her, she was so booked up.  Luckily she had enough friends and each only went once.  I certainly didn't expect that much because Alan likes to be there to talk with me to the drs. and nurses, but it would have been nice if someone down here [once in a while] offered to take me and give Alan a break every so often.  Most people don't really think these days, I guess. 

 

Have a peaceful weekend and I hope you can begin your solid foods again.  Small baby steps give us encouragement until the crisis passes. 

 

6-10-02


I am losing my patience] because my painful skin reminds me constantly that it is burnt; and my esophagus will stay this way too until it is over and receives no more rays. And the exhaustion increases; now I can't hold my head up or keep my eyes open.  Can't even lift a hand. So this is short.


I am a burn victim......On the outside, we wiped off ash off the skin this past weekend. Yes, we slather on the creams 24 hours a day.

6-11-02

The dr. said I have till next Wed. to repair a lot of the damage before they see me again and hopefully finish the last 6.  The dr. said today, if I feel I am healed sooner, just come on in.  I am glad they are more cautious than my Mother's drs. were in 1972.  He noticed the edema in my neck and chest [especially the left side where the lymph nodes were removed - I feel  pain there ] and he said if they tried to continue, I'd wind up in the hospital with tubes in me.  He was pretty clear about having the same philosophy we have - he said they don't want to kill the patient trying to kill the last cancer cells.  Amazing how this is dragging out.  It is just about 6 months now, since it began.

 

If I weren't so out of it, I'd probably be impatient and upset.  But it seems as if all I do is sleep most of the time - really out of it.  The dr. said today I am debilitated but have done better than most that get this much radiation. He said not to push and just let my body repair itself.

 

I don't think this happened at Harding, unless they discover something carcinogenic in the building there.  It is such a rare type of cancer that the doctor's can' t even speculate because there just aren't enough cases of it. 

 

As to why it happened to me......I know God has his reasons but we just don't know them yet.  He has something big planned for me and this is my workout first, seems the consensus from some people.  So when I get my next chance at life, who knows what I'll be up to.  We are glad you two are there with us, also.

 

6-12-02

Thanks for the pep talk.  And the NEEDED ice cube reminders. 

 

Adam wrote me to say he thinks I am brave; a lot of people have said that.  For me, I don't see that side of me; I was planning to be a coward if I ever got cancer and do nothing so I didn't end up like my mother.  I am still hoping these drs. are more careful.    At some point you have to stop your research and just trust. SO I trust, but I keep on questioning and double-checking everything.

 

None of the creams really work to stop the itching. It is miserable. Like you were stung by thousands of mosquitoes. Today the skin progressed to a dry, flake with a blackish color, like ash.  So I have proof they really burnt me.  Not a lot different than what they did to my mother.  The dr. said that what we see on the outside is similar to the inside. Not a pretty site at all.

 

Just think, a few weeks ago, my hair was all over the house; now it is my skin.

 

Tonight we went out for a short while.  It was something I had to really force myself to do since I am so uncomfortable.  The Zakutos were down and invited us to come over - some others were going too.  It is tough staying in all day, out of the sun.  I can't even water my plants until the sun goes down.  Anyway, I can't talk so Alan talked for me and then once in a while, I'd write notes.  We went to the local ice cream parlor and I was able to get down part of a sundae.  Usually I can eat the whole thing.  But this was so painful, swallowing each bite.  Oh, well.  I haven't had a treatment in 2 days but the esophagus just doesn't heal that quickly.

 

making-an-ash-of-myself-barbs

 

I appreciate your continued emails.  I don't feel as  isolated when I can communicate this way.  Not being able to talk at all really cuts a person off.  There are some people that won't email; they say they'll call which is good for Alan but it doesn't help me to stay in touch. And others that emailed before, now say they are too busy [with their social lives].  That really says a lot to me; you do find out who your friends are at a time like this.  For months people have been saying what could they do.  And there really isn't much; but when I lost my voice 3 months ago, I said email would help.  It keeps my fingers and mind busy so I don't dwell on the pain for a while. 

 

And not being able to go out during the day finishes the isolation. They do not want the skin covered in any way, and if anything touches my skin, no matter how soft the material is, it abrases it terribly. They don't want it to get infected.  That is why they want me to stay away from other people.  And since Alan gets close to apply the creams and do the physical therapy, he tried not to touch others so he doesn't cross-contaminate me. My resistance is way down and I am susceptible to  everything that comes along. Not being able to talk, I couldn't explain that to ______that day on the beach when she encompassed Alan.  Till my immune system is healthy again, we'll have to stay away from people like her, that don't understand this.

 

Anyway, this is all the stuff that would make a good hand book for people when they are confronted with this.  It is a whole new life.  They say one out of three people get cancer so it could be a best seller.

 

6-13-02

The side affects got very severe this week, even without treatments.  I can see that when someday, I finally get my last one, that the next day or the next week, you don't wake up feeling back to normal. 

 

The news from the radiation oncologist is bad and good.  BAD  -  The dr. said I have till next Wed. to repair a lot of the damage before they see me again and hopefully finish the last 6.   He said not to push and just let my body repair itself.

 

 Your emails do help.  When Alan prints off a bunch each day and brings them to me, it helps me by giving my something to read and get thru my day.  I originally told people just email me your normal day and what you do so I can look forward to doing the same things one day.  But some people mean well, I am sure, but they have gotten carried away.  Someone wrote me that they are ''just so tired, tired, tired...'' and it is from going out to dinner or lunch or playing mah jong, etc.  They have no idea what tired is when it is imposed on you thru a medical treatment. I'll miss yours when school is over but maybe soon after that my vocal cords will heal.

 

Alan is used to his back; he has to be very careful - you know, it can go out with a sneeze or something that is so silly.  He does a lot of exercises to strengthen it; his personal trainer at the gym put him on a program and exercise is the only thing that has worked.  In fact, I sent him to the gym last night to do some of his program; he didn't want to leave me but I insisted I'd be fine for an hour.  Harold has the same problem; he does the exercises thing too.  And he has relief. 

 

It is disturbing that even though I haven't had a treatment in a week, there is no inkling my vocal cords are healing.  Last weekend we stopped by the Zakutos for a little bit to get out of the house and have a change in scenery and someone was there who started a conversation with me so Alan explained how I am not allowed to talk [the guy knew it anyway - he emails us].  Five minutes later he starts talking to me in French and saying what is the French word for X,Y, or Z - I wrote on my tablet "Fermez La Bouche."  [it means shut up] - He still didn't get it.  He was being oblivious to the fact that I couldn't talk.  If I couldn't speak English, why the hell did he keep talking to me in French.  Just an idiot.

 

 My nerves can't take much more of this. On the beach, someone, who has been almost mute for 5 years, was a magpie a few weeks ago.  He kept asking me questions that were not yes-no answers.  And he says he's used to the voice thing because his wife can't talk sometimes.  He sure fooled me. 

 

   Ashes, ashes, we all fall down.

 

6-14-02

 The severe exhaustion increases; now I can't hold my head up or keep my eyes open.  Can't even lift a hand.   I didn't think I'd get on the computer today, my energy level was so low, but  I had some Pepsi and even though it raises my blood pressure, it helps me stay awake a little bit.  Now - what did the Neibauers do this past week. We wiped  ash off the skin in my neck area.  Black charred ash from my badly burnt up skin. 

 

The dr. said  I am very debilitated [they bring you as close to death as they safely can]. 


The doctors said I can't take any chances at all and have to protect my neck and my immune system, from everything [people, sand, winds, etc.] so the skin doesn't get infected.  The sand reflects the light even when you are under an umbrella, so no beach. ON top of this, they told me I have to stay in [the new skin is too delicate] during the day.

 

People really downplay radiation;  I guess because they have not been thru it.   Or like with some breast cancer patients, it is only a third of the dose that I am getting so they don't get these effects. 

People have been trying to encourage me now for 6 months; each step they say now the worst is over ---and it isn't.  Something always happens.  I can't listen to that cheery optimism anymore, because it sets me up for more heartache when it turns out otherwise. I guess that is what is meant by taking one day at a time and not
looking ahead.

  I don't have to pretend this  a science fiction movie - I feel like I am in it. The evil ones are dropping like flies but so am I .  Today when I woke up, I felt horrible; and I haven't had a treatment in a week. It will take months to recover they say.  After each treatment, I also felt horrible. Can't even explain all the discomfort and pain.  There aren't words .  Science has to find a better way...soon.

Barbara the Great Burnt One

 

6-15-02

 

We just took a short, short walk [by our standards] on the Ocean City boardwalk with Alan and Eileen.   The dr. said not to do too much since repairing the damage is using lots of calories so I need to conserve my strength.  But I really wanted to get out a little, especially since it is gray and that is safer for me.  And I wanted Alan to have a change of scenery, too.  Still can't talk [the vocal cords take a long time to heal] so it is a one-way conversation.  We tried a Dairy Queen treat but on the way home my esophagus started getting pain from too much swallowing. Getting very impatient to get on the road to repair.  I guess it was too much because I came home and slept till tonight.  But I feel like I have to try doing it.

 

They say the Body Is A Temple, but in my case, the Philistines dropped in. 

 

 looking-like-reddy-kilowatt-fried me, barbs

 

Nancy told me about Sheryl's father, too.  Alan bumped into her and the dork of a what she calls a husband when he was picking up my RX at CVS last weekend.  He said that Mr. Personality gave him NO salutation whatever or said one word during the conversation; didn't ask how I was or send regards.  Just clammed up. What a couple!  [a couple of 'what', I do not know......].  Sheryl has called a few times and Alan said she has a habit of saying "that's good", no matter what he says.  For example, "Barbara's esophagus is burnt."  "That's good!"  Like she isn't paying attention [which we know anyway]. 

 

Then last time Alan was saying how the email is my only link now with people and she said she knew you were emailing so that makes up for her not??????  She said at home she can't get on the computer because the others are on it.  I heard that from one other lady too.  It is irksome because if I had a friend that was sick, and there was no other way to communicate, no kid of mine would deny me 10 minutes of a machine in my house that I bought.  The kid would have to learn what priorities mean.

 

 Since the treatments are cumulative, each makes you feel worse and worse.  I need to have 37 and have had 31.  Severe exhaustion has increased daily.  

 

 Every structure in my neck is subjected to the powerful rays and we are hoping there is no permanent damage being done. They did lay all of this out at the beginning.

 

 Yes, I started highlighting my hair about 8 years ago, I think.  It really covers the gray and like you, each time, I let her do more and more.  Right now, it needs it so badly, but I am not allowed to do that chemical thing.  I like it better than dying it because it is not all uniformly one color and looks more natural.  And it can last 4 - 6 months which is a long time.

 

Yesterday, since it was gray, was a good day for me to surface and go out a while [no staying under the covers for me].  We hit the mall for a short, short trip [also pretty empty off hours and less germs, I hope].  Couldn't find any of the items I needed.

 

6-16-02

The new skin is all covered with some kind of red and raised rash.  And it itches like crazy so if tomorrow it is not better, we will go over to the hospital to show the doctor.  Just what I need!  Have no idea of the cause - one of the creams we used? an allergy to a medicine? or just the new skin syndrome?

Thanks for your father's reinforcing advice, about each day; and your
mother's advice.  That is true - I try to do that.   So let's see - the good
in today...Sometimes I feel like some people abandoned me but most people,
like you, are there for me,  and  just keep boosting our morale.  One beach
couple came over this morning and brought me these chocolate figaros [my
most favorite of chocolates]. They are addicting.  But they also brought
chocolate Band-Aids - just the most creative idea I have seen. Hate to eat
them - they are so cute.

Everyone does things that perk up our spirits.  Before the chocolate people
came, a neighbor, Eileen Skolnik, brought over a bouquet of gorgeous
flowers.  And every Sun., our neighbor on the next street brings us over
dinner.  This week she made home-made pizza [not easy for me to eat but a
very good meal for Alan].  Alan tells her not to - she has done enough, but
she doesn't listen.  She doubles the meals.

 

I did what you said and rested - all day today.  Didn't go out at all.  When
the sun went down, I put on gloves and pulled a few weeds out. It felt good
to do something 'normal.'  Imagine - weeding felt good; usually a chore, but
very welcome now.  I have freesia bulbs that have flowered and they are my
favorite [the fragrance is intoxicating].  We have 4 types of lilies that
are flowering.  And the dahlias have buds.

It is so hard to see people, being so uncomfortable and tired.  And then to converse - it is tough to write, get it all down, and not get more tired.  It also hurts to nod my head because it moves the burnt tissue.  I told Alan, one very short visit a day is about all I can bear now.  If that.

 

Maybe by the time you are here next, there will be improvement.