July 8 to August 8, 2002

 

7-8-02

 

FREE AT LAST FROM THE LINEAR ACCELERATOR.  NAZIS INVENTED THAT INSTRUMENT I decided, each time they'd bolt my head to the metal table.

 

Still recovering from yesterday's visit up to the surgeon in Jenkintown, especially when Dr. Kelly took the 'liberty' of surprising me with scoping my vocal cords so he could look at them with a camera.     This was even too much for me.   I tried not to go into a panic as he described it, but it was nerve-wracking.

He was concerned , like we are, that I am not able to talk yet. Three months now.  And he is concerned that I still have no voice, have a terrible cough,  and  can't really eat because my esophagus is  raw and burnt, as if you swallowed drain cleaner.  The doctors say even though I am finished my radiation, it will stay in the body and my symptoms will get worse for a month before I start to heal.  I did not like this at all. He anesthetized my nasal passages and inserted into my nose, a foot long tube with a camera on the end.  The rest is not pleasant.  He said they are 'sluggish' and wants to see me again in a few weeks.  Just want this all behind so I can get on with my life.

I think it caused irritation from him inserting the foot long tube into my nose and down and around back into my throat.  Because I have been coughing continually and just had a dilly of a choking spell where I couldn't catch my breath for too long. Ooh, what a feeling.  I did not like that test

 

So after a 2 hour ride home, when we got home,  again I was exhausted.  How can you get tired
sitting [not driving]  in the car?  Been sleeping, sitting some more, and tried to take a little walk but the humidity is bad for breathing.  Plus that smoke haze is not good for lung-challenged people.

 

The surgeon is also very concerned about my eating so little. And weight loss [17 pounds, I think].  I try hard. But my esophagus is in such bad shape [as he saw] and food kills going down.  When I told him I was able to eat 1/2 a steak sandwich WITH the bread, he eased up some.  I didn't tell him it took an hour.  One time it took me 2 days to eat  a hamburger.

 

The air was less Smokey today but just as hard to breathe because of the humidity.  Most people don't have the air conditioners on here but I cough less with it so I am staying in.

 

You asked about the flushes. About a month after the surgery, they returned so after carefully checking with all the drs., I went back on the hormone replacement.  No one can say for SURE that the hormones won't make the tumor re-grow. They don't think they will, but no one knows much about this type of cancer.

 

7-10-02

Dr. Kelly never says too much.  He never ever even gave us any type of
prognosis.  We like him a lot and think we are just beginning to understand
him.   Just he wants to see me in 6 weeks. We gather he didn't see any real
problem to be concerned about yet, beyond the swelling, redness, rawness,
and sluggish vocal cords.  It was hard to ask questions with that snake down
my nose and throat and when he was done I was in no condition to talk.

 Today, though, I was able to rasp out a little more than a whisper, which
we think, my have been an iota of an improvement.  Instead of Alan having to
put his ear by my mouth to hear, he could be 4 feet away.  I can't project
any further than that. But by evening, I wore out my vocal cords again.
Back to a whisper - that bit of a rasp was such a tease.  If I talk too
much, it instigates the coughing. SO I am going to have to be careful.

 

- when I see myself in the morning, it is depressing - I am still losing hair by the handfuls.  But there are some people that don't say it once; they keep saying it over and over [I know people mean well and they really don't know what to say .]

 

When you are in pain, though, you really don't care how you look; you just want it to go away.  It gets so complicated because I had my last treatment about 2 weeks ago,  and some people extrapolate and say that I must feel good if I look good.  That is when I get upset. I really don't care if I have a scar or look good; I want to be rid of the cancer and have it never return. That is what is important now and forever - not superficial looks.  Ida PInsky goes on and on EVERY TIME I SEE HER, about what a fabulous job the surgeon did with the scar - nice but not important in the Grande scheme of things. That is all she is interested in - one day she sat on the beach bitching for 45 minutes to me how her nails keep breaking these days.  I bit my tongue but wanted to say, that I'd trade anytime.  You can understand - wouldn't she be lucky if that is the worst she has.

They can't see what is inside.  Healing is a slow process because they did extensive damage so I  give Death a kick in the Ass!  The doctors say that when they give you radiation treatments like I am receiving, they give you the most your body can tolerate without killing you.  They bring you as close to death as they dare.  And my cells are still dying and I feel it every moment.   Some people try to minimize how you feel with cancer to equate it with a flu or cold.

 

7-12-02

 

Today, I am still getting over what happened last night at dinner; so I am scared to eat so I ate very little.  So we could get a change of scenery and take my mind off of it, I told Alan we could walk to the beach.  Well after a half hour I said I wanted to go home.  [he could have stayed, but he wanted to monitor me]. First, some bitch was smoking behind me and of course the wind had it blowing to me.  I can't take it on a well-day but now smoke and spices really choke me up good.  Then I had to get out of the cold wind [it was brisk today] and away from the 'stupid.'  People try to say something positive but as the bible says, there is a time for positive and a time to just acknowledge when someone is in pain and to not keep up that cheery optimism.

They all know my esophagus is burnt and the whole story how I can't swallow. SO they sit and ask dumb questions that we have answered for weeks.  They just don't seem smart enough to understand that there is real physical damage there and it has to heal.  Like "do you have an appetite,"  "why not eat Jell-O,"  "why don't you meditate before you eat..."   Since I can't answer, I just sit there until I've had it.  Didn't take long today.   I just don't have the energy to explain each time, all the facts I explained already in the past.  How could anyone coughing and gagging and hacking have an appetite. 

But next week, I made an appointment to get my hair highlighted - maybe that will make me feel better.  I do appreciate the compliments about looking good but it is really just very expensive theatrical make-up I found [read about it in the soap opera magazine].

 

At this stage of our lives, we are too old to deny ourselves anything.  This illness has brought all that into the forefront and I no longer hear my mother or grandmother's voices in my head dictating to pinch pennies. 

 

We have spoken to others who have cancer and they know exactly how I feel about not caring what something costs; recently my prescription, for the first time, was not in the prescription plan either.  I used to be very careful with spending  and now am changing my ways drastically.  We are treating ourselves to a lot more niceties these days, not that we didn't before.  But I'd shop in the market too carefully instead of getting what I wanted.  You know, substituting cheaper [less tastier] brands for a special item.  We have learned a lot this time around and have loosened up a bit in that regard

 

I am not sleeping as much during the day now so I thought maybe I was starting to get better and then something always happens to set me back. We were really scared tonight.  Speaking of which, I had physical therapy and she always makes me feel so good afterwards but something must have swelled a little more that usual.  Because at dinner, we had a bad incident.  We are learning what swollen tissues means.  In my case the esophagus and trachea openings are partially closed due to the swelling.  So they are not as wide open as in regular times. 

 

I thought I was being such a gourmet cook; we barbecued onions and peppers on the grill with mesquite.  And then I cut them small, and put them in a tomato sauce.  Very tasty.

 

 Well, a very tiny piece of barbecued vegetable slid over my trachea opening and adhered to it [like a  magnet] and I couldn't breathe, for what seemed like forever.  Alan tried pounding my back and the Heimlich with no luck.  I had to write him a note what was wrong, I was wheezing so badly, with no air getting thru.  Finally we figured if I kept gargling water, it would dislodge the piece and eventually it did.  It was paper thin and only 1/8 inch in diameter so we know the swelling is pretty severe.  I will have to be super careful now.  That was a close call. Needless to say, we ditched dinner after that.  Now I am afraid to eat almost everything.

 

Every once in a while I try to get back some spunk. Did you get to read my dog letter that was printed in the CURRENT.  If not, I can send it to you in an email.  The Mayor wants me to speak at a meeting coming up; if my voice comes back, I will be happy to do it.  But it is next week; I don't know the chances. Some people that have called me have even given me more ideas about how unsafe this dog situation is ---they are off leashes all over the beaches and on streets. 

 

7-13-02

 

We went to our own beach today and it was much better.  We sat by ourselves
for about an hour and then neighbors came down and sat with us.  Much more
respectful.  The wife slept. The daughter read so Alan talked to the
husband.  Then some of the people from our other beach walked over to check
on me; they said if Mohammed won't go to the mountain then the mountain will
go to Mohammed.  By that point, I was the only one awake.  Imagine - I'm the
one who got the radiation but they all fell asleep on me.  I bet they
'caught' it from me.  The visitors just stayed a short while and we all went
back to resting.

Your are right about staying away from others.  I don't get within 5 feet of
anyone; the last thing I'd need now is a cold or any type of infection.
That would do me in.
 

7-14-02

 

Today was a bumper crop of goodies for me.  A few people were nice enough to drop off little get well items today.  One lady from the beach brought an unusual variety of African violet plant .  Another friend brought this beautiful candy dish loaded with Hershey kisses.  And this lovely neighborhood couple brought over a copy of their church bulletin.  They had my name listed for special prayers for the sick in our community.   SO all this is very touching, to say the least.  It is amazing what people come up  with to cheer me on.  After we just got done talking about the other kind of people, too.  At least the nice ones are in the majority.

 

There is a whale swimming back and forth off the beach [it was on the news] - this happens every few years.  And today we went over to Ocean City .  We only went out for a short while; I felt I
REALLY had to.  Gail Goldsmith came to the shore [ Ocean City ] for the weekend and we haven't seen each other in a year.  And since then......well, you know both our stories.  She is almost done her 2nd round of chemo.  We agreed to  meet at noon at a certain landmark on the boardwalk.  SO we get
out of our car and this car pulled behind us and waved. They parked behind us and before we walked up to the boardwalk, Gail took off her wig to put on a hat.  The poor thing has lost every hair on her head.  I barely recognized her.  She says the wig is too hot and uncomfortable which I can totally understand, since I get irritated wearing a hat.

The skin on her feet is all coming off.   And the worst part was it looks like black and blue marks on her arms,  but it isn't.  This is going to be terrible - read with care; she has burns FROM THE INSIDE OUT, THAT IS HOW STRONG THE CHEMO IS.  Talk about brave!  When they inject the chemo, they are SUPPOSED to be extremely careful and place the needle in the vein.  Because if any leaks out into the surrounding tissue, it causes severe burns.  Poor Gail - what luck; they did a lousy job and the chemo leaked out. SO she is burnt.  I hate cancer treatments - what they do to the patient is gross.  There really is nothing worse than cancer.  Everything else---there is hope for.  This - you can go thru it all and still die.


Before we said goodbye we were all standing by the railing and the lifeguards whistled EVERYONE in from the water.  Never saw that before.  But WE DID SEE fins ---shark fins.  They went out in the lifeboat and the fins were around it.  It was wild to see this.  Like watching a movie .  
We walked about 20 minutes and I whispered a lot.  Too much.  Remember she is my protégé but she didn't have to go so far as to get cancer because I
have it.  She took the same courses I took in college; she likes to travel how we used to. She doesn't want kids.  Probably she won't even get married. It just felt so bizarre talking about our illnesses that we both got at the same time.

7-15-02

 

We decided since it was so hot today to go down and sit under the umbrella on the beach for a while - it is like 20 degrees cooler there.  So it is refreshing to go and read a book.  We sat on our own beach at the end of our street. It was quiet and stress-free. Friday, we wanted  a change of scenery and to take my mind off of everything, so I told Alan we could walk to the other beach we sit at in Margate . What a mistake.

 

7-16-02

 

Well, you told me ! You of course hit it correctly; I am as bad as the people I criticize, because I have set unreachable goals for myself - as far as the healing.  As for the honey, you suggested.  I bought, at the natural food store, a cough syrup that is honey, loquat, slippery elm, ginger, and a few other things.

 

You're right about the dumb questions.  Today we sat on our own beach for a while to read our books.  Then we took a 5 minute walk to the other beach.  Why - I felt like a bit of exercise. The stupids were there.  One guy says to me, "how bad do you feel that they are building a house next to you.''   I could only stare; we have always known the house would go up and between you and me, we welcome it.  It will give us nice neighbors [we met them] and some privacy from the street and prying eyes.  And shield our house from a lot of beach grime that blows over.  But this guy kept on it; will you lose your view, I worry about you how you'd feel about this house, etc.  Alan finally told him that it is meaningless, after what we just have been thru.  Some things just don't matter at all and that is one.  Finally he shut up. We left after 2 minutes. Next time I'll walk the other way.

 

As for drs. visits - there is going to be a long time before I get a real
break.  But at least I don't have to go every day like in the last 2 months.
Next week I see the radiation oncologist and he will give me scripts for the
blood work and a lot of scans and whatever else I need.  I am taking this
week 'off' from all drs. [unless I got worse or something happened];
otherwise I'd go pick up the scripts and have it done.  Just am so tired of
seeing drs., etc. that even though I still have to go for physical therapy
tomorrow,  I told them I will only come in once a week.  I just can't do any
more.  And I need speech pathology but haven't called for an appointment
yet.

 Alan has been great; he is so patient but feels helpless and just wants to
be able to do more to make me more comfortable.  He gets me water, ice, ice
packs, bangs on my back, whatever.  I feel so bad especially when I can't
breathe; and I cough and choke - it better heal and pass soon.  This is no
way to live for him.

 

7-17-02

 

Before I went into the hospital we made a list of select events I could look
forward to [and we haven't made 90% of them so that is very depressing - a
big let down, no matter how I push myself].  Saturday night is one of those
events we had planned and bought tickets for months ago, if I can make it.
We go every year with about 60 people -the Longport Picnic. They sell about
1200 tickets.   It is always on the Ocean City 's Night in Venice [a water
parade] and it is always on the bay so you can watch the parade of boats from there, going over to Ocean City from Atlantic City , Margate and Ventnor.  They have a dj, bbq, snow cones, soft pretzels, face painting for the kids, etc.

Tomorrow night is the meeting at city hall to pass anti- unleashed dog
legislation;  I printed out my thoughts and Alan will read it for me.  There
are 2 fellows in Marven Gardens that had sent me a note that they like my
letter.  They are very active in their area - policing the streets and beach
and handing out literature [copies of the law].  They will come to the
meeting as support.  They are copying a lot of handouts that they got from
the internet [
www.dogbite.com].  It is very interesting; most dog owners
don't even have enough insurance to pay for the damage to someone if their
dog bites them - like reconstructive surgery.

That is so ironic and too funny to have another coinkydink, that Dr. Cassir
is your Aunt's dr. too.  Even the drs. here use him for their dr.

 

One last thing about the cholesterol; I have been on estrogen for 12 years
[and progesterone] because I get disabling heat episodes from the neck up
[another story].  SO the drs. felt estrogen would be extra good for me since
it controls the episodes and protects my heart.  Now this news story came
out about how bad the estrogen is, carcinogenically speaking.  I have to
make a real decision here.

 

The  accumulative affect seems to be pervasive with cancer treatments. And
then it has to work in reverse when you finally are finished.

 

When I read the comment from your dr.  about your throat and only seeing one
other case  as bad, I  knew how you felt.  It makes me wonder how others
tolerate this better than us.   It is hard to believe that 6 months ago, I
felt great - doing kickboxing, etc.  The drs. did say they'd make me feel
lousy first.  But nothing prepared me for all of this and then the visit
last Monday to the surgeon.

 

Your sister is right about the batches of home made food. I think of that a
lot - especially when I taught and the kids would bring in food that was
home made.   You don't want to take any chances.  That is how I feel; I feel
bad enough that I can't even fathom a simple cold or other problem on top of
what I already have.  I can't breath well as it is; so I can't picture me
with a stuffy nose too.

 

It is always so nice to hear from you, although I'm sorry to hear that
you're  feeling so lousy.  I know it is very difficult as you go through it,
and it doesn't help knowing that our state of health WILL improve one day.
It is just an accomplishment making it through each day.  It is always with
hope that the next day will get better and we will be able to tolerate all
these side effects.  So hang in there- one day we will have different types
of emails.

 

7-18-02

It's no big deal - the 17 pounds was a cushion.  I still weigh more than
when we got married.  In answer to your question, liquids are tough [as well
as even just good old saliva] - it hurts going down.  I do suck ice chips
all day but I have to have them dissolve and warm up before swallowing.  A
Rita's water ice burnt my throat even more.  Ice cream is too cold.  I am
slowly figuring this food thing out - I have to be very careful.  Especially
not having any barbecued and spicy and smoked items.  And eat small amounts
and soft foods.   I have been noticing little things all along.  For
example, about a month ago, we bought a bag of those candies, circus
peanuts.  Did you ever eat them - they are orange colored.  Anyway, I
couldn't catch my breath - must have been a certain spice in them. I just
kept wheezing until it passed.

I had physical therapy yesterday and next week they will discharge me but I
have to do it every day at home.  They want me to start speech pathology
next - they think it will help with the swallowing problems.  So I do have a
script for the speech pathologist.   There were only so many visits I could
do each week and the drs. felt it would be better to be done the radiation
first and wait till some of the edema in the neck subsided.  Alan will call
for the appointment tomorrow.  I want this entire week off - with seeing NO
medical people [except for one p.t. session].  It has now been 4 months and
I craved for my body not to be touched.

 

7-19-02

Usually I am on top of all the correspondence.  If I don't hear from someone when I think they usually answer by, I send a note.  But lately I have been living in a fog. I barely could hold my head up to read the emails and answer them [anything non-personal letter gets deleted immediately; can't even look at 'jokes' or want to at this point].   Maybe it will lift; I stopped taking the codeine pain killers and take only plain [like Advil, etc.].   I hated the side affects and feeling so out of it.  And the email can come in on any one of 7 computers so every once in a while,  Alan doesn't print one off.  But if I can do it, I go around once in a while and check all the in boxes/  Checks and balances - not working, though.

 

  To keep my mind busy is the problem I have.  In my mind I want to do all these things and it runs away with itself.  My armchair list.  And then my body won't let me do them.  I'll tell Alan 'well today we'll try a little bike ride and in reality I can't even sit on the bike and pedal most days.  So that is frustrating

 

All those choking stories you wrote are scary.  Human bodies can be so fragile that it always boggles my mind that we do as well as we do for so long.  And on the other hand, it is mind-boggling that the body can take all that it is given sometimes, without caving in.

 

7-22-02

Saturday night,  felt like being in the land of the living again  .  It seems like a small thing ---until  you get
sick. Longport had its annual picnic at the bay behind city hall.  It gets bigger each year and this time they trucked in some mummer's.   I see a big difference in my energy level though, since I stopped the codeine pain killers.   The d.j. was so good.  My feet work well so we danced a little; it is just my neck area that is causing all the grief.  All would be well if I didn't have to swallow.

 

This is the only way I can communicate these days.   And we both are getting so frustrated.  It is too tiring to sit and write notes  or even to just listen and try to show expression and nod [which hurts my neck a lot].  A few minutes is tolerable but when it goes on too long, I just can't do it.  Until I get my voice back, we are going to have to limit that type of social activity. It doesn't do me any good.

 

Last night we saw all 4 Siravo's.  They were down to Ocean City this weekend and they drove over to Margate for ice cream sundaes  so we met them.   At .02 PLAIN;   Kathi insisted they wanted to see me, only for a little while  [we seem to be getting this every weekend from someone or other being down here], so meeting out is the best way,  for now.   Being so tired from Sat., I hated the pressure of communicating without talking  but it has been over a year since we have seen them.  And they had already left to drive over and it was too late to cancel.  Dessert is good because it is shorter duration for me.  They really are very nice;  Brittany and Scott turned out to be lovely kids.  Scott has an interesting job at Drexel.  Don  lost 100 pounds already since April; he has 100 to go.  SO you can imagine.  So many people with so many BIG real problems in life.

 Friday we went to Resorts where I got my hair cut [she said my back 'hairline is a little high'].  That is polite for half my head has no hair there.  It shouldn't bother me after all the other problems, but I guess it does.  Between Alan and I we have a full head of hair.  The drs. told me  3 weeks after the last treatment I could get it highlighted soooo......I did.  Let's hope I have no effects from that one.  It looks good; everyone was saying they liked my hair 'natural' [they mean with a larger percentage of gray] but I couldn't stand looking in the mirror at it and was happy to get this done today.  Tom Jones was appearing for a show  at Resorts [ Sat].   Our stylist does his hair, when he is in town.  Imagine, the lady who puts her hands in my hair has had her hands in Tom Jones hair.   I was disappointed  he didn't come into the salon when we were there.

 

7-23-02

After complaining to another friend that I am getting really impatient to
get my voice back, etc. she  was brilliant, as are most of her
lines......she wrote "it is hard to be patient but what choice have you?
So true - we loved it.  Some things you can't rush, even if you try.

7-25-02

 As far as getting out, I have been forcing myself.  The radiation gives you
an exhaustion where you can't even will yourself at times to move.  That is
because so many cells are being killed  and it takes months for them to be
replaced by the body.  At times,  I can't hold my head up or keep my eyes
open.  Can't even lift a hand.  The drs.  said not to push and just let my
body repair itself. That isn't me to just sit around.  So last weekend was
my 'debut' and now I am paying for trying to do too much.  All afternoon I
slept. It is like you are anesthesia or on potent pain killers.     The good
news is that the cancer is  feeling pretty sick too by that time and
hopefully has been sent packing.

7-26-02

Today was my one month check-up appointment at the radiation oncologist over at the hospital in Somer's Point and he  prepared my list of follow-up studies. He wants the tests done next Friday, which will be 5 weeks after the last treatment. I need a carotid Doppler and subclavian Doppler [where the clot is] so first I go to the vascular lab very early.  Then later that morning I have the CAT scan of the neck and chest.  I am already feeling nervous as to what the scans will show now [and then in the months to come.]   Well, let's get thru next week first.  My friend Miriam told me to picture the cancer cells as the Al Quaeda while I got radiation and the rays were nuclear weapons.  She said my burnt throat was 'bombed out' and when I can't eat she says 'wartime brings rationing.'  She was great with providing me with all kinds of imagery.  She is an artist. Everyone we know did something different.      Let's hope it doesn't show any demon cells that shouldn't be there. I have worked very hard to kill them - the war better be over. 

 

7-27-02

The other saga was I have been trying FOR 7 MONTHS to get my HUP records
from '96b when that bastard J. French did in my trigeminal nerve. It turns
out to be a long story of stalls and delays and finally they told us to send
a check for $44.__ for the file.  Very expensive photocopying, huh? But we
sent it because I was very curious.

The file never came.  Alan called the other day and they said they didn't
get our check.  We had just gotten our bank statement and VOILA - the check
was cashed by them.  He was on the phone transferred from person to person
and going in circles.  So I sent a Barbara-email and gave 'em hell and told
them I want the file fed exed to me, I want my money back as a gesture of
apology for aggravating a cancer patient, and  I told them I planned to
report them to government and consumer groups if they didn't comply.  The
file came yesterday and the check to day.

 

Today my neck really was tough to turn and move and it felt very swollen
inside and tight.  Can't figure out why. I'll do more of the exercises more
times per day. Dinner didn't go down well so I didn't eat more that a few
bites of chicken, few bites of potato and half a roll.   For some reason,
the esophagus just hurt too much to do much swallowing.  Maybe the bagel I
had for breakfast, roughed it up some.

7-28-02

 I bet you can relate to this analogy [I don't know if I had written you this] but at one time I felt like I was on one of those moving electric sidewalks and just let them do whatever they had to do to me. Stick my arm out ---they take blood or blood pressure; lay down---they lock me into a mask and radiate the bejesus out of me; etc.  I never pictured myself being so docile and willing.

 

The drain problem you've had sounds familiar from  hearing it from a lot of people with a lot of different surgeries.  Like, a former student that had breast  cancer had so much trouble with her fluid filling up after the lumpectomy.  When they sliced my neck up, I had a drain afterwards, too.  At first it was natural drainage.  But when I got the blood clot and they gave me thinners,  I hemorrhaged.  SO it was too much blood for the drain so they had to hook it up to a pump. And then the blood clotted in it and they'd have to clear the line every few hours.  How the residents did this is they'd come into my room and squeeze the tubing IN MY NECK with their fingers and work the blood clots over from one side of my neck to the other where the opening of the drain was.  And I laid there like a lox and let them do it.  I thought that was going to be the night I died.

 

And after the drs.' visit we  met one of the patients that was there getting radiation at the same time as me, for breakfast at our favorite haunt, Smitty's on the bay. It is down the street from the hospital, and it looks like a shack but it has gourmet breakfasts.  And the view is just so sea-shorey.  Gisele and I started talking in between waiting for our successive burnings at the stake; she speaks French [which I dabbled in with her], coming from Canada , she is a med. tech, and had breast cancer.  She is 80-something [and she did so well with her treatments]; her friend that drove her every day came along for breakfast too.  We had a nice relaxing breakfast - great waffles. With beaucoup de chocolate chips and walnuts [usually I dig them but they don't go down well these days].   But I made a valiant effort and it is a beginning.

 

Somehow my body knew it was 4 weeks after the last treatment and VOILA!  I can talk.  It happened yesterday.  Each day, more and more vocal power is coming back to me.  After 3 months of not talking, this is such a relief.  I just knew this would happen - I JUST bought a white board for writing notes to people and lots of tablets.  Best money I ever wasted.

 

To answer your question, I think I lost 17 pounds total.  I tell all my 'fat' friends who are always trying to lose weight, that they shouldn't even bother since you really do need a cushion on your body of 20 pounds.  Because you never know when you suddenly will need it.  The first 10 pounds were from the surgery in March.  Some days I do much better than others.  It is not predictable.  Last night I could barely swallow chicken and potatoes and some soft rolls I made.  But today we went to a birthday party in Linwood, on the bay, for our friend's 2 year old so that was fun.   They had lots of people, a cowgirl doing lasso tricks, a pony, 3 lifeguards at their pool, and tons of food.   It was a scene.   I managed to eat a mild honey mustard wing, a part of a roast beef hoagie, and a soft and warm large chocolate chip cookie [that went down the best].  Oh and let's not forget the birthday cake - it had to be all butter, it slid down.   Those type of foods appeal more to me for some reason [a lot of 'healthy' items and fortified things just turn me off lately]. And I am bored by a lot of foods that I have overdosed on now for 4 months.  If I never see Jell-O and Bill Cosby again, it won't be too soon.

 

Each day I force myself to go out and do something normal, like go to the market or take a walk.

 

My mind runs away with itself of all it wants to do.   My mind says I want to bike up to the boardwalk and go here and there but my body won't let me.  After a trip to the market or any outing, I had no energy at all and usually sleep the rest of the afternoon.  Guess I have been over-doing it. The body still has to replace millions of cells that bit the dust.   

 

  7-29-02

We didn't do much today; we hate this oppressive heat.   So we stayed in the air conditioning and did some cleaning and Uncle prepared some photographs to enter into the art show here next weekend.    About 3:30 we wanted a change of scenery and thought maybe it'd be cooler on the beach under an umbrella so strolled down with 4 of our neighbors.  Uncle bought a wagon so it is easier lugging our chairs and umbrella.  We sat about an hour and talk a walk in the water.  It was refreshing. But as we left to walk home, a few steps off the beach, the heat hit like an oven.

 

 I can get anorexic just hearing people talk about food; which seems to be their favorite topic. 

 

The Stupids......continued.  Someone we know [a friend of my sister's] called and she is a psychologist.  She is a royal pain, too.  It started a few weeks ago : on the beach, she came over to me and in front of everyone, made an ass out of herself.   [p.s. - Alan told her ALL the information each week, on the phone but she DOES NOT listen].  She is a laughing stock and doesn't know it. People could not believe it - and that she is supposed to know how to talk to people, since it is her profession. I was trying to sit and not choke and cough.  And so it went until she came along and then I had had enough.   People tried to intercede [my friends try to do the talking for me and limit the visitors a bit]  and say some things to her but Sheryl kept going on and didn't listen to them.   Typical Sheryl but I find it intolerable and now rude.

 

She kept saying how great I look in her phony way, over and over and over [which I don't- - - the stress turned what little hair I have left, gray] and when people told her to stop it [because they know it upsets me ------  if that is said only once, I can take the compliment, but if people go on and on, I start to get stressed out because I feel horrible; at this point I am not vane - I could care less about my looks or scar - I want to be rid of cancer cells and just feel good - that is the priority].  So she kept saying 'well if you look good then you feel good..." and on and on.  That has become a major pet peeve [did you know that if you look too good, even at the drs. office, you will not be taken seriously - I have read articles on this].  I took out one of my pre-written talk cards that said "shut up" [I never used it before] but she didn't get it.  So I shooed her away.  With my hand motion.  I closed my eyes till she left.

 

She knows she annoyed me because she keeps calling Alan and bothering him.  And the other day she called and started up the same crap.  I answered [I have been talking hoarsely for one day now] and she heard my voice and said, "Oh this is good, you are better; you're not swollen any more, you are healed, you are on your way, how good you're doing, etc."   On and on.  I listened a while and couldn't take it since that day I really didn't feel good, I am still losing weight, and I need scans on Friday which I am very nervous about.  I couldn't eat dinner due to the pain in the esophagus and she is bouncing off the walls with glee.

 

Finally I said, "It is a shame for a psychologist that you don't know how to talk to cancer patients."  She interrupted me - not listening as is her usual - and said how she calls all the time and she knows how to talk.  I said there is a time for cheery optimism and a time to just acknowledge when someone is in pain and take that moment and hour and day and help out in that regard.  It was lost on her. I told her she was clueless.  And a few other things - then I knew I was wasting my precious voice on this idiot.  When I got off the phone, Alan said that now Sheryl has 2 assholes, since I ripped her a new one.  I guess I was brewing and simmering because she bumped into a very old friend of ours and told her NOT to call me or bother me.  And I would have liked to have heard from this person - it has been 10 years or so.  What right did she have to take it upon herself to decide that?

 

It's a shame; 99% of the people are wonderful and sympathetic and such a blessing.  It is a tiny percent that are so thoughtless. So Alan will go back to screening my calls.

 

The clot was from the surgery.  I thought I told you - they gave me blood thinners, as soon as they realized I had it but it was within a day of the surgery and then I hemorrhaged.  My neck, around the incision, filled with blood.  

 http://www.neibauer.net/Neck.jpg

 

 

7-30-02

 

Today was the visit to the speech pathologist at Mainland Division of the
Atlantic City Hospital in their Betty Bacharach rehab. The therapist was
very good - she had all my records from the surgeon and radiologist so no
time was wasted. She tested me and said considering what I have been thru,
my numbers were good for now. She wants me not to talk a lot and rest it
often ---have long periods of no talking.  And she said if I don't improve
after 3 months, to come back.  I am glad there are no exercises to do - she
said it would make my cords worse.

That is one of the nicest things that has happened in months; I have been
surprising people all over the place.   The other day I walked up behind a
bunch of beach people and said hello and when they turned around and saw who
said it they all started screaming.  SO others came over saying "what is
going on over here."  Voices are so important.

 

Now here is another story, from another old 'friend.' She wrote me a note how her mother's house was burglarized.    This is the type of language she used in her email - "Last week was very traumatic for all of us; we still can't believe it; she almost fainted and nearly had a heart attack;  she is just sick;  SHE WANTS TO KNOW WHAT SHE EVER DID TO DESERVE THIS; I LOST 5 POUNDS; I AM LEAVING WITH A HEAVY HEART [on
vacation]."

It was shocking to read about her mother's experience, on one hand. I am sympathetic, of course.  I never, though, used such overly pedantic language when I learned about the cancer. I felt it wasn't really called for.  

I guess I am just super-sensitive these days but I thought her language was overly dramatic for the situation.   I really appreciate when friends that don't have cancer, write things that happen that are bad and they couch them with, it is not like what you have.  It shows such compassion.  She will be in a real pickle if they ever had to deal with cancer and cancer treatments, if they get so theatrical over a break-in.

I would gladly give up any possessions, even sentimental ones from my parents, if my health would come back and they really did get it all. It gets to a point in life where everything has to be put in perspective - materialism goes out the window and prayers to be released from pain rule life.  It is what is in the mind and heart that is more important when remembering those who have died - their possessions are only temporary in our hands.   My friend Miriam wrote that her father said that no one should grieve over anything that can be bought. 

 

It's a shame; 99% of the people are wonderful and sympathetic and such a blessing.  Like a couple of older people, who live just a few streets away, made a special prayer for me at the Longport church by the bridge and it appeared in their church bulletin.  And another neighbor told me they pray for me by name every morning and night.  An old friend dropped off a plant, last week and another a ceramic heart filled with chocolate kisses.  There's a neighbor we share watermelons with when they are on sale [a whole won't fit in anyone's refrigerator these days] and last week she wouldn't take her half of the money. It is a tiny percent that are so thoughtless.

 

All your lovely offers - I loved [and laughed] over painting my nails.  That would be fun - do you do sparkles. Do you have any secrets to it lasting more than a day - that would be a help to find a product that lets the polish stay on.  The massage - you are such a character, a sweet,kind, thoughtful, wonderful character - [you don't want to take Alan's job away, do you?]. Food [we have TOOOO much already since I am eating less, it is so stacked up ].  Clean.  Like you don't have enough to do.  Such beautiful offers - thank you.  You are very creative.  Why can't more people be like you.  You should start a school for 'the stupids.'

 

7-31-02

Tonight we went over to the gym so I could go some physical therapy; the
machines are the same as in the rehab center - I just use different weights,
much lighter ones.  It felt good when I was done, but it doesn't last long.
The trouble with cancer is that the treatment [no matter which one a person
gets] leave them with physical differences than B.C. [before cancer].  I
guess I am feeling pains and discomfort now that I didn't before because the
pain killers masked it.

 

Afterwards we met our friend Patty and her son for ice cream / yogurt
sundaes. That became my dinner.  I have no appetite and nothing much appeals
to me these days.  I try.

 

8-1-02

At times the pain seems to be decreasing - and then I have a day like today where my entire skin hurt.  Can't explain it - all my skin hurt.  I also just don't have much of an appetite and after a short time, food bothers the back of my throat & esophagus.  I am still losing weight.

 

Each day is so different lately; sometimes it goes forward like my voice suddenly came back.  But yesterday my neck really was tough to turn and move and it felt very swollen inside and tight.  The drs. said this could happen... the radiation really 'cooks' the tissues and it is like overcooking chicken in the microwave.  I'll do more of the exercises more times per day.

 

People have done such nice things that make us feel so good. Today, for example, my kickboxing teacher from the gym, brought us chocolate cupcakes and very special Lunch at The Ritz earrings for me.  I can't wear them for a long time since they are huge; they would hang down and touch my new 'velvet' baby neck skin.

 

8-2-02

You are a gem.   Thank you for having Dr. Cassir call me today.  We couldn't put in words how much we appreciated this; we know how busy you all are there.

 

I was so thankful I didn't have to wait until next week to know the scan results - I was jumping out of my skin, very quietly and nervously, since every one since January always brought us bad news.  Dr. Cassir said all is ok with my CAT scan that I had this morning.  That was all we wanted to hear.

 

SO we each made it thru this recent round of being tested.  It is numbing.  We are just sitting here now......contemplating.  Exhausted. 

 

It was a nice change to hear positive news for a change - the first time in months. 

 

The other news was that I also had a Doppler of my carotids this morning [since last November my right one was 50 % occluded].  Well, it isn't any more.  Miracle of miracles - they say it must have been the giganticus growth pressing on it [like a kink in a garden hose], and that is what closed it off temporarily.

 

8-3-02

Were you tired after all this entertaining?  I can't even imagine it at the present.  I can barely lug myself around sometimes. I'll start to make dinner and forget...till 2 days later.

 

8-4-02

It felt good to do normal things again.  seemed fitting to begin with you.
And we sure didn't start slow, did we.  A chopper ride!  It was a little
scary but the views were beautiful from up there over the ocean looking back
to the boardwalk. We loved you on the roller coaster.   By the time we got
home, I was zonked and could barely hold my head up but it was good while it
lasted.  .

And this morning it was so hard to get up; I kept falling back to sleep.
That made me late to meet with our trainer to go over my new program to work
on strengthening my shoulder and weak arm.  She is very good and doesn't
want me to over-do it.

That store was neat, the one with the Crow costume.  There are supposed to
be ways to be able to concentrate the mind so you can draw certain results
that you want.  The mind is the one part of the body that they do not know
too much about yet.  There is so much of the brain that they can't tell us
about.

No suggestions from the therapist for swallowing; after she did the tests, she knew my problem is 100% organic / physiological and I just have to heal from the burns.  Her tests for breathing and swallowing showed I am doing ok in those categories, considering the damage. You don't see very much swelling from the outside; but I feel it on the inside.  At times, it feels like someone has their hands around my throat.

 

8-5-02

Alan takes a lot of literary license when he writes.  Though with all this therapy and treatment, sometimes I feel like Brooke Castle.  With physical therapy at Bacharach complete, it is nice that there is one less place to lay down in each week.  It got to the point where each time I came home from one of those sessions, I felt like showering and changing my clothes because so many people use the equipment and lay on the tables that it could have spread germs I didn't need.

 

…that creep Arlene who used to own Nicole Dominique at Margate Towers .  She treated me  horridly before my surgery [from washing my head in cold water to making me sit with a cold wet head while she gabbed on the phone to tying the  cloth TIGHT around my neck where the mass was, as I was telling her to not tighten it since it was hurting me badly].

 

8-6-02

...get cancer twice. What can I say? I know that you were hoping for a different and better  report. I  wish that I had some magic that would make all this vanish.    You have been so brave, forthright, and even  awe-inspiring during my ordeal. 

 

Please let me know if there's anything that we can do to help out.  For example, we would be glad to look up anything you need on the internet or double check any information you want, get names, etc. Or make phone calls.  In the meantime, we'll start the prayers and send good vibes your way.

Let us know if you can get this.  It is my original mask from the treatments.  Now it is "Cancer Art" that I will sell to raise money for my Thymic Foundation. Alan is sending the forms in this week.  We need to raise money for printing literature and manning a website and toll-free number.  And we need to find scientists that can work on a protocol [like a monoclonal antibody] for this type of cancer.

 http://www.belayne.com/1.jpg

 There is an art show here this weekend where I will enter [and sell] the mask.  I decorated it symbolically [notice the teardrops under the eye opening ] and maybe it will bring someone good luck.  Adam suggested doing the drawings to ward off evil spirits.  Of course I couldn't do it until they were finished using it.  

 

Did you notice on the mask the 'teardrops' out of gold rhinestones and the down-turned mouth out of purple rhinestones.   Then there is the 'little Barbie crown' of mirrored rhinestone on the top of the head.  It will be interesting to see how it is received by the throngs. Most people entering their work have watercolors of lifeboats, lighthouses, and beach scenes.  Not us - always the differerent ones!  I took my desert scene, a watercolor of a garden, and  a photo of Mayan pyramid.

 

http://www.belayne.com/1.jpg

 

I think I am ready to enter the social whirl again - at a slow pace.  We did
a little experiment and met our friends, the newlyweds Dolores and Arthur,
for ice cream tonight in Ocean City .  I was able to put away, with no
trouble, a hot fudge sundae [we tried Sweet Jug at 8th and Ocean].  They
dated for 35 years before they got married - it is so funny.  Guess they
were trying to save enough money!  It was so hard to find parking there; we
usually don't go there in the summer because of the crowds.  But it was
still nice. The boardwalk had a lot of activities at each block - singers,
music, karaoke.  Very different from the Atlantic City boardwalk - my nephew
[he's 24] visited Saturday and wanted to eat at the Hard Rock Cafe.  Another
experiment that was fine.

It was really very very good and one of the best restaurants we've eaten in
up there - I got a very soft meatloaf and mashed potatoes and was able to
eat half of it; down home cookin'].  And then we got wild and crazy and
walked around Steel Pier a short time.    He had a tough week so it  was
good to see Adam smiling - it is a long story  - Alan and I spend our time
trying to undo hurts that others cause.   Adam needs to  hear  the
words that give 'positive reinforcement.'

 

Here is another stupid people story.  We needed to get some scans from our surgeon at Temple to our dr. here so Neal and Sherry picked them up and brought them.  We went to their house Sun. to pick them up and they had another couple there.  The man was an insufferable ignoramus so we just had to leave.  When we got there, he started up with how NO ONE should ever do any aerobic exercise.  What an oaf!  He read ONE article and now he is an expert.

 

Then he started in on how radiation and chemo are passé and they don't do it any more in bonafide hospitals; they use chelation therapy instead.  When Alan heard that, we left.  Quickly. The numbskull saw one TV show so now he's an expert.  I told Sherry yesterday, I couldn't figure out how someone could say that and she said she doesn't get it either since his wife had those very treatments for her breast cancer years ago. What a boorish nudnick. He was so opinionated.

 

8-7-02

You're right - looks aren't important.  Remember that old Saturday Night Live Skit where the 2 characters kept saying, "it's more important to look good than to feel good.''   Wrong!  That's why I am overly sensitive when people go on about how great I look [what'd they expect - a corpse]. It's the inside of my neck that is still raw and painful, even thought the outside and scar look 'lovely.' 

 

  Nancy came down with a friend this afternoon and we met for dinner - I had been thinking of this one restaurant for 6 months now.  It is an open air deck that faces the ocean with beautiful views.  Their steak sandwiches, to me, are the greatest.  So that is where we went.  I managed to eat about half - since they are so greasy they slide right down.  But it did hurt afterwards [too many swallows re-abrase the area, I am learning].  It was good to see Nancy and catch up.   She brought us Belgian chocolate from her cruise.   Yum - medicine!

 

 

 

We like how you always have a different routine; how do you remember them all.  It is very impressive.

 

I was very careful tonight and didn't over exert.  I did one set of each, which felt just right.  You really know your stuff.  I like the change......holding the weight a few seconds.  My body is good now at telling me when enough is enough and I am listening.  Being patient is one of my new vocabulary words and I am taking it slow.  My piano teacher from 20 years ago used to say, "Go slowly like a snail and you will not fail" and it applies here in the world of exercise, too.  I don't need any more trouble.

 

I am taking some vitamins but not as much as I used to take.  The drs. say that while the vitamins help you feed and build your body, they also can feed cancer cells.  Another new vocabulary word ---moderation.  I will get Gatorade though; we used to always use it with our tae kwon do classes.

 

Did you see the news on the Siamese twins at UCLA?  Well what I wanted you to really notice is the dr. who was the spokesperson.  He is Michael Karpf, our old college friend [his wife and I were in Med Tech. together for 4 years].

 

8-8-02

 Lucille - be strong and know we are rooting and pulling for you here.  We are praying for a good outcome.  We are too tough to let this insidious disease get us so we will keep adopting the attitude that 'it' will not prevail.   WE WILL. I know it is hard and many times I scoff at the people that say that to me [easier said than done] but you know coming from me, it is genuine and heartfelt and well meaning.

These are not idle words anymore, coming from me.  I know in the interim, that each step you go thru is pure hell.  Especially the family part, you described. Let me know how the talks turn out and how the various members of your family are - I feel badly for your mother since she is the oldest and has had her share of illness over the last years. You and John are in our thoughts constantly.  It is so hard for John and Alan, too.

You were one of the people who told me to keep busy and go out for
walks,etc. every day.  So when I couldn't, I tried to do other activities in
the house.  The mask was one; yes - it felt good to embellish it and just
let it take shape.  Now I am looking at it in a more positive light - that
it should be a good luck amulet. For someone else.

When you wrote about the monkey on your back, little did you know it would
be literally. As I read what the scans  confirmed - it tore me apart to read
that all the vertebrae in your  spine from top to bottom are affected.   We
are both so sorry you are going through this.  We hope that  Alan can find
just the perfect new treatment to end this once and for all for you.
Miracles happen.  Would Gleevak be useful in your situation.  We know a few
people on that and similar.

Believe me, I never thought I'd be here this summer when I first heard my
news [and especially how rare it was and there being no protocol] but I am
still here to annoy people.  And plan on just going from scan to scan.  For
the few beginning months, I totally stopped shopping - nothing [I figured
I'd never get to use or wear whatever it was I'd be buying so why buy it].

At first when we traveled, we liked to keep busy, too but we always made sure there were lots of places to stay that were on the water.  That is what we are drawn to.  Now I am more agoraphobic than ever and so tired all the time that I never want to go anywhere again [we have gotten invites from friends and family all over the country and we just don't want to go anywhere].  There was a blurb in PHila. Magazine and the writer said "the shore is as exciting - in a different way - as the end - of - the - world places I tend to find myself in."  I can't wait to get well again to throw myself into my old activities, though I'll never  be the old me again.

 

8-9-02

That is so sweet to have your family think of me as family.  Since we are a
little short on family, it is a thrill to have a new adopted family to cheer
us along this new road we have never been on.  It is people like you and
yours [and the smiles and kind words of our friends here] that give me the
courage to make this journey ---that no one should ever bear alone.


I have this new side affect where my skin hurts and the car jostling is very
painful.   The drs. say it is possibly all the toxins from the break down of
the killed cells [good and bad] that the body can't dispose of fast enough.
The toxins collect in various places until the body gets rid of them but it
can hurt when it is in the skin and muscle, etc.

 Here is why you can't become to intoxicated with good scans.  Two days ago
we got an awful email from my friend Lucille - she's a medical technologist
[like I was]  who moved to the top of the ladder and is in charge of all the
labs [and radiology] at Jeanes Hospital in Phila.    She is our age and a
beautiful person to know and she had breast cancer and a mastectomy 9 years
ago and went for her annual check-up and she wrote me that the monkey is on
her back again.  Literally.  The cancer spread to her spine and bones and
pelvis.  We are all so upset.  She is hoping they have some new treatments
to try.  This is why there is no celebration at good reports - she said you
always wait for the other shoe to drop.   No one should ever get cancer
twice.  Until all the terrorists at least get it  once. Anyway, she emailed
me today that every vertebra in her spine is affected.  We are heartsick;
she has been one of my cheerleaders for  months.  Every step of the way, she
was emailing and calling us to keep us positive.  She got us drs. names and
experts to read my reports [for 2nd and 3rd opinions].   I have know her for
17 years - at first professionally.  When I was in charge of med tech at
PCP&S, our senior year students left the main campus and went to various
hospitals for their rotations.  A lot of the women that trained them [all
med. technologists] now have cancer, in one form or another.  It is scary.

  I am not up to doing much these days and I fizzle out quickly, sometimes in 10 minutes.  I don't expect any dramatic improvement for months, according to what the drs. tell me.  There is a lot of damage that has to heal right now.   The most we do is go to the beach once in a while [not often] and that is where we see anyone we know.    Being immunosurpressed, we stay away from crowds and touching people.  I have to stay in the shade so we are not walking during the day much.  Dullsville but as they say, I am here.