June 17 to July 7, 2002

 

6-17-02

---did Stephen tell you?  I wound up at the hospital this morning.  Now the
new skin is all covered with some kind of red and raised rash.  It got worse
all night and I hardly slept. And it itches like crazy so had to show the
doctor. He prescribed a new cream [I am allergic to the other they gave me,
probably] and I have to go back tomorrow. If this keeps them from starting
up the treatments again...

 

I am still not able to make a sound; when people stop by for 10 minutes, I
write notes.  I save them because I can say the same things over again to
the next visitor.  But it is too tiring.  Hurts to nod my head because of
the burnt skin. Sherry and Neal stopped by our patio, on Sat. for 15 minutes
and yesterday Sue and Jerry for a few minutes.  Others called to come over
but I had to tell Alan I can only do one 10 minute stint a day.  It is
exhausting sitting up and trying to listen to what is going on around me.

Being sociable is a real problem.  I am very uncomfortable and can fall
asleep in an instant sometimes.  Let me get back to normal before you visit;
it'd be a shame to drive 3-4 hours to sit 10 minutes.

 

Not having had a treatment for almost 2 weeks, you'd think I'd be improving,
but I am not.  It doesn't happen fast.  Some days I am actually worse.  The
radiation stays in you so long [ something about the half-life]. And the
damage takes so long to heal.

 

Can you imagine people talking to you and you just sit; try not to nod yes or no.  It is tough.

 

6-18-02

   I can read words, with fear,  that soon one of those 'silly' and upsetting comments is going to come through. Someone wanted us to come over and visit them one night last weekend [which we never made it]; her 'silly' comment was ..."just take a long nap in the afternoon so then you can stay up at night." 

 

You are doing good at trying to keep plugging away and keep up your life.  It is very hard work, isn't it.  It consumes the entire day.  Yes, I have heard of Biotene.  My dentist told me to use their toothpaste while I am having the radiation, which I am.   Between getting nutrition, watching out for teeth and the rest of the bodily systems, etc. this is a full time job.  Non-cancer people have no idea what your day is like.   The realities of cancer treatments are never really explained to the public - what the patient goes thru on a day to day basis.

 

How do you tell them that there is no magic.  What works one day may not work the next.  And you can feel improved one day and the next day you can't move

 

Like you said, it is in the home stretch but it is reeeeaaalllly dragging out at this point.   

 

  Well, So here I am, trying to give  Death a kick in the ass.  Well, Hello death ---Kiss my Ass!

 

Last MOn., we had to go to Jenkintown to see the surgeon and he said pretty much what we knew.  He said I have made it thru 31 treatments, better than most people do.  The dr. said my body is fighting hard to repair the damage to the good cells, hence the severe exhaustion.

If all I do is sleep now, he said "do it.". What a drag. The surgeon wants to see me when they are done and he said to get a CAT scan.  Seems like we will be attached to him for a long time; he will be following me and writing about this rarity with his residents.  

 

And on it goes in this neighborhood. One of the commissioner's daughters has melanoma.

And you are right about the housework and who will ever notice.  Some things seem meaningless, don't they?  After what we have been thru health-wise, especially.  I am cleaning less and enjoying that more.  Star Wars is just not my thing but Alan went with a friend; the d.j.'s from the radio station here are friends and reserved the theater for a premier and gave us the tickets.   We rented "Kate and Leopold" which is more my speed these days.  It has to be light and funny. No action or drama or fright.

 

6-19-02

---for your good wishes.   Among this torture, there are so many blessings, and most are in the form of people.  Little gestures and nice words go such a long way when you go thru something like this, as you both have found out, I am sure. Since I received your thank you card with so much encouragement, I have wanted to thank you for that.  And then today your great card arrived.  It was so  funny and of course, true.  Recess can't come soon enough.  It brightened up my day.

 

  A friend emailed a unique idea she thought up and reminded me that at least I can afford this torture. I know she's  right.    Off and on, that has crossed my mind.  She proof reads documents of people with no insurance and their treatments are discontinued, even though that is illegal.  It is sad for those people.

 

All my friends with breast cancer never had what I am going thru - even the 85 year old patient that has the appointment ahead of me. Her skin didn't even redden.  She was never exhausted. Their dose, though, is much less.  Since mine is an aggressive cancer, they are giving me an aggressive dose.

 

Sorry not to be filled with encouraging news.

  6-20-02

 

As Alan says, "Hair today, gone tomorrow."  The hair hasn't been too much of a problem after it fell out.  In mid-May, clumps of my hair in the back, started falling out; it doesn't seem too important in the scheme of things but it was just  shocking at first.   But at least that doesn't hurt.  The hair is in the line of fire in the very lower back of my neck.  It is complicated how they make up the radiation plan.  So you don't get too much of a dose from any direction, they divide it up each time [it is called fractionation] and some of the time the linear accelerator cooks me from the front and the table turns and then it cooks from underneath.  Rotisserie style.  They try to avoid longs doses on the spinal cord,etc. this way.  So  one day we went to Resorts to get our hair cuts -  I love the stylist [she does Regis' hair when he's in town, Tom Jones, etc.]. 

 

People get a kick out of looking at my chest with it's ONE hive -  one gigantic hive from shoulder to shoulder.  Those who don't know me really never grasp how allergic I am. People who have seen my simple mosquito stings know.

 

I feel like the cake in the Barbie Bake-off oven.  I have been telling people it is like when you overmicrowave food [a roll, chicken] and it comes out rubbery and you can't get your teeth into it.

I have had enough of this house arrest.  Most of the time I sleep but I petitioned the drs. to let me out during the day, promising to cover up completely.  So if I am not too exhausted, they said okay, for a little while. I actually went through the social worker.  Did I tell you about her [her father was my professor at
Temple during my master's program - he lives in Linwood now and when I am well we are doing a science education project down here - another story.   I found a softer top - it's not perfect [like nudity] but allright for a short while.

The treatments are starting to make their affect again - beaucoup de dormir aujourd'hui.   And today I was 'locked down' in the mask 5 extra minutes so they could take CAT scans.  And that means extra radiation too - they use the rays in the linear accelerator for those... A temp was there and she did it wrong the first time or I would have been done in half the time.   Bastard - they don't realize the head position is so uncomfortable.

 

There WILL NOT  be any type of party - I am way too superstitious to do that.  Alan and I are planning to start a charitable foundation, though, for research for my type of cancer - there is none at the present, it is so rare.  After we fill in the very long and confusing forms with the government, we will have a fund raiser so that is where our many supporters can gather.  I hope to do it at one of the casinos.  Originally I wanted to do a celebrity charity auction for the Leukemia-Lymphoma Society in honor of my mother and the Rabbi from Beth Torah would help since he has leukemia].  But now in light of my plight, I will do this for more research in my disease.  The L-L group is well on its way and doesn't need as much help.   I want to find a monoclonal antibody or something like that.

 

6-21-02

---today I didn't get my treatment.    I was all psyched up but had no treatment today so it is still 4 left to go.  The linear accelerator broke down.  I was sitting and waiting for them to call me back and the nurse came and sat down next to me [a bad sign] and said she had news I would not like.  The physicists are there trying to get it working for Monday.   I thought I'd be all done by now and recuperating.

 

We have several big events next week and I RSVP'ed yes, months ago, thinking I'd have weeks to spare to recuperate.  SO now even if everything goes smoothly [what are the chances], I'll have treatments till Thursday and my esophagus will be totally raw and who can eat in that state. Our friends are having this grand dessert party Wednesday night so I just don't know about it now.

 

After we left the non-event at hospital, we drove up to the mall.  I had ordered make-up at the C. Dior counter and it came in [3 years I have been tracking down this special concealer].  Now we'll see if it is worth the price and the wait. By the time we got home, I needed a 3 hour nap. You can tell that even 2 treatments can waste you.  And my chest hives are still bad on the radiated side; they don't have any chance to heal.  But the right side of hives are a little flatter.   But I have developed a horrible cough.

 

The treatments take 5 minutes.  I remember when you did your eyes.  I didn't know you wore the mesh mask too.  My first mask had my head in an uncomfortable position.  My chin had to be up and way back [so they wouldn't burn the salivary glands]. 

 

6-22-02

You know in the "Sixth Sense" how the kid saw dead people.  Well,  I am afraid  that all I see are germs. It has always been a "thing" with me, or a "problem" depending on how you look at it, but I've had this OCD issue for sometime now and can't hide it anymore.

Since the surgery and radiation, something has made it worse - who knows if it was something they gave me or something physical they did during the  procedures.

But, my cleaning routine could be more time-consuming now, if I were well enough to carry it out.  And the worse problem is, that now, in the last month or so, the doctors are encouraging me to be this way.  They are always impressing on me how I can't get any infections now. It is the first and foremost thing at the moment and most imperative to do , and the nurses are always giving me instructions to avoid getting germs [like I am not the expert in this already].  If I would get sick, I have nothing to fight it with now.  I already have a bad cough [and they don't want it to get worse].

 

Actually my old cleaning rites were not strong enough, B.L. [before Alan's lyme].  If we had been more vigilant back then - we'd have been smart enough to catch that wayward tick that started Alan's problems.

 

For the time being, it is best not to have people come in the house or car since I don't know who they have been in contact with . They are not ill themselves but carrying a host of things that could be infectious for someone in my debilitated condition.  Or 'it' could be in a shoe tread; that is easily brought into a house. 'It' drops off, then me or Alan sits on the floor or carpet and WHAM,  we get the 'bug.'.  At the hospital, they present so many scenarios to me.  So if anyone would come into the house, afterwards I 'd have to disinfect the floors or where ever they walk or sit or touch.  Forget all the rituals with the bathroom, if it gets used.  That is more cleaning than I can handle at the moment.

 

I remember when Louellen  got her leukemia treatments; her mother used alcohol on every card, and item that came in the house.  Louellen stayed at an upstairs window and you talked to her from the sidewalk.  You told me your friend used a mask.  I am trying not to get to that level.

 

If you are coming from Phila., it is not around the corner.  How could you come down from all that way and just stay on our patio. This is one of the reasons why I am not up to company. I can't do the cleaning afterwards.  Not until I am healthy and get some energy again. The awake-periods come and go.  Sometimes people call and say they'd like to stop by and if they are late, like the lady the other night [she drove up an hour later], I am wasted already and had to go in.

 

 I was told to avoid  people that give  hugs and slobbers.  Can't have any germs deposited on our clothes for later on.  We made a sign, I hold up for people not to touch me or Alan. He is my main care giver and can't take the chance of passing germs onto me.  It was a problem but people we know are good and they tell others, if it looks like they are going to touch us. People are always asking what they can do to help.  So we gave them this little chore.  Pass the word not to touch us.  

 

We have to be careful everywhere we go or else I can't go out.   SO it is worth it so I don't feel like I'm on house arrest. There was a story on the news awhile back about how the supermarket cart handle is one of the dirtiest things you can touch.  After all, think of all the hands that go on it and what could be on those hands.  And the little kids that sit in the seat and slobber all over it. I try to wipe it off first or not touch my face or hair after I touch the handle, till I am done and have some Lysol sanitizer nearby. Or an alcohol swab. 

 

I am so allergic that normally, if I am any where near cat dander [invisible] I will have big problems.  A lot of people we know have cats and when they sit on our patio chairs I have to disinfect them afterwards so the dander doesn't fly around and go on or in me.  I am already choking and  wheezing from the edema from the internal burns.  At times I can't catch my breathe and I don't want to make it worse.

 

When people down here come to visit, we sit on the patio about 10 -15 minutes.  No on has to go inside.  If they did, I could not be able to refrain from washing the floor afterwards . Or whatever they touched.

 

Maybe they are more my friends because of all this. The ones that count, are the ones that you have an upright relationship with.     One of Eileen's favorite expressions, is 'don't expect anything from me and I won't expect anything from you.'  Everyone does what they can; some people can do some things and not do other things for people and it could be the opposite with another person.   Like she has the parties in her house, and I serve and tend.  Because I can't have them in mine.  And she can't play hostess.  As long as everyone understands each other then it works out well.  We all are neurotic at different degrees.

 

Some people  pinch pennies. Some people push a light switch 9 times.  Some exercise obsessively. Some shop. Whatever it is,they run their life according to the 'thing   if I touch surfaces in the garage or out of the house, I am mindful and keep my hands away from my face until I clean them.   So now my house then becomes my sanctuary - where I don't have to worry about what I touch.  It makes the illness go a little easier, if that is possible.

 

If I could talk, this would have been so much easier to explain.  That is my other major problem - not talking is a big drag.  We have tried to be with people for short times and it is draining.  They still ask me questions and say 'don't talk.'  I have many stories.  Including how I shooed your pain-in-the-ass Sheryl away today [everyone heard how stupid she was].  So till I am better again, maybe we can meet somewhere [we are coming up July 2nd to Hahnemann for a dr.'s appointment].  It is soon so maybe we could do that or meet halfway or at a buffet.

 

The cough is worse at times.  This morning it was so bad, I was wheezing and couldn't catch my breath. I was pretty scared.  Something definitely is swollen in there.   It happens a couple times a day.  If I keep drinking and sucking tiny ice chips, it helps.  But sometimes I forget or just can't get another mouthful down.
I am trying to make a normal weekend for Alan.  So this afternoon we sat on the beach with 30 of our 'closest' friends.  I wanted to just sit and read my book.  Remember, I can't talk.  So as usual, people are so stupid.  They come over and say don't talk, and then ask, like this one lady, "So what were you cleaning off your chair with."  I bring moist towelettes because we store our chair with the lifeguard and it gets full of sand.  I wipe it off so it doesn't blow on my raw, new skin.  So what is the big deal.  It is something wet and for cleaning.  For that she wants me to strain an answer out. 

 

I wanted to get rest [as you suggested], enjoy watching the waves and hearing them break.  And so it went until we had enough.  I will say that a few of our friends were very protective of me.  As people came up to ask their stupid questions, my friends answered for me and explained [as if it needed explaining]. The other thing that boils me is people that have to touch us. We have to avoid getting germs .  If I would get sick, I have nothing to fight it with now .

 

Alan announced, that "Barbara has only one nerve left at this point and you are stepping on it."  I am keeping good notes for that book I will write.

 

So today this one wizard kept saying how I look good and then added "so you feel good."  Everyone around me knows how I feel and they started rolling their eyes because they know that comment is one of my pet peeves.  Finally I took my hand and waved her to go away. I had had it but good. Afterwards, that was the talk of the day.

 

6-23-02

Thanks so much for all of your help this weekend.   When people originally asked, how they could help, I couldn't think of much.  And the last thing I would have thought I'd need is a 'voice.'  And for sooo long, already.  It is nice to know someone that could help and takes their job seriously.  You were marvelous in helping me to try to make a normal weekend for Alan.

 

Actually, no on should ever have to tell people to stay out of their personal space.  I would never touch someone, especially when they are ill and in discomfort. Unless they asked.  I do understand they mean well, but they should get into the habit of thinking  'first' .  In this day and age, with how common it is, you'd think everyone knows someone who has had cancer treatments and they should know the drill.  Go figure.

 

Now Alan said we are down to 'one hand.'  This has got to be one of the slowest countdowns ever.

Wednesday morning we had a marathon of seeing doctors.   I am saw our dermatologist at 8:00 A.M. who said my 'rash' is definitely a severe case of hives from the sulfa in one of the burn ointments - of course, I have an allergy to it.The pharmacist and the nurses at the various doctors were in disbelief when they saw me come in.  

 

 He prescribed steroids [a pack for 9 days] and yet another cream.  He gave us some good advice for my skin, to get thru the rest of the treatments.  And he said to be careful of my one good carotid getting occluded by the overdose of radiation on it.  He was preparing me for one day needing that balloon surgery, since my other carotid is 50%  closed.  This all stinks and even though there is an end in sight for the treatments, it seems like my health care is going to always be an issue.

Then we went to the hospital to see the radiation oncologist. 
  I didn't see how they would continue to radiate me with my bright red wall to wall, shoulder-to-shoulder, bump-to-bump skin but lo and behold, the dr. said to go to the linear accelerator and start up again.   So we were back on the roster again.  They saved my mask and bolted me down and gave me a frying .  As I left the nuclear physicist called after me, "only 5 left."  He's been doing that since we got to single digits.

 

From there Alan took me to the physical therapy rehab center [I didn't go last week - surgeon's orders] but I like the part where she massages my neck and scar.  It helps loosens the fried tissues so I can move it.  All three - the surgeon, dermatologist, radiation oncologists -  want this to be a lifelong treatment.  They said surgery and radiation so close together to this new tissue,   is a severe damage and formula for crippling fibrosis in the area.  Manipulation daily will help to keep my head turning [or I won't even be able to drive]. The dermatologist said it can happen for years after the radiation treatments stop [just like the other shitty side affects].  Such pleasant news.

Then we went to the CVS pharmacy to get my new meds [they just love all my business - I should be getting frequent purchasing bucks]. 

 

 This is so very funny.  The doorbell  rang last night.  We are in our nightclothes so Alan looked out the window and saw a police car.


So normally we'd ignore it but since it was the police he went down. It was the policeman that lives down the block, on duty. Earlier, Alan gave him one of his "TYPE A" books,  in which this one particular policeman [tall, young, you know the rest], is the basis of one of the characters in this book.  So he was just coming by to get the book signed.  When  you read the book, he is Luke Walker.  A major character. Real name is Joe.

 What is even funnier, is we have a nosy  neighbor down the street who watches everything.  Last week another policeman knocked - he was here to deliver legal documents and blueprints from city hall [their new 'postal' system - the mayor decided the police would deliver the packets from now on for the meetings, instead of mailing them] for his next zoning meeting.  I know the nosy one is wondering what is going on.

Love,

Peace and Benedryl,

steroid popper, cortisone rubbing, Barbara

 

6-24-02

 But they are starting to burn me again.  The steroids were helping; that sulfa allergy was a big upset.  The drs. and nurses say in my condition [ESPECIALLY AFTER THEY SAW FIRST-HAND MY ALLERGIC RESPONSE] THAT EVERY REACTION GETS EXAGGERATED NOW].

 

   We are  glad they are careful, to an extreme.  It is necessary after the week I spent.  If I would get sick, I have nothing to fight it with now.

 

 I do understand some of those 'beach people' we know mean well, but they should get into the habit of thinking  'first' .  Someone tapped me three times yesterday - in the area of my blood clot, until I said something.  It is also the area where I have lymphedema from where the nodes were removed and it is still painful.  Imagine ---reaching across and down [I was sitting] to purposefully poke my arm.  I was livid and wondered why I was so nice during 3 pokes.  Well any jolt to my body [and I have 3 friends with cancer that I am emailing] say they feel the same way.  Not to mention the chance of cross-contamination from one person to the next.

 

Another day, someone knew not to touch me or Alan  but they flicked a towel at me twice.  Do you get it?????? She had no idea it felt like a volcano [you know that headache commercial with the exaggerated pain waves].

 

Everyone on the beach is going to this engagement party and I am tired of being left out. And there is a big charity do Wed. night we were invited to.

But today it was fixed and here we go.  Isn't it always a saga?

 

6-25-02

That was so sweet of you; yes I miss especially talking to you.  I have hundreds of calls to make but of course you are the most special [and I don't mean that in the 'little yellow school bus' - special.]  The Right Reverend Al does ok on the phone, but it is not his specialty - my stories have more 'teeth' in them.

 

Well, they are starting to burn me again... two days in a row, so far, and it takes its toll. Today I saw the dr. after the treatment. He checked my carotid pulse and said it sounded fine.  Harold said to do that frequently in light of the situation.  And he checked my lungs because of my hacking away.  He said they sound ok. 

 

Yes - they fixed the linear accelerator and yesterday and today they barbequed me, well done.  The radiation oncologist examined me today - they are very careful which is the only way I'd have it.  This is potent stuff.

 

It is something I will need to do - find a speech pathologist here.  I have all I can handle for the time being; the physical therapy has helped a lot. I do it every day if I can; the therapist gave me the stretch bands I need for homework . My upper  arms and shoulders, back and chest and neck are burnt and very hurtful plus  the left side is where my blood clot [from the surgery] is.  That slows me down a lot.    And in addition, in the same area, there's soreness from the lymph node surgery, for which I get the physical therapy.  That, they liken to when breast cancer patients have the nodes out and they get lymphedema. 

   

Oh, the benzoin was a mess, literally.  I started to pour it in the little space in the vaporizer and it spill out and  over the side AND ONTO our baby blue carpet.   And now I wonder if when it 'vaporizes' all night long, if a fine mist of this brown colored water is getting even more onto the carpet.

 

For drinking water, we alternate bottled and filtered sink and refrigerator water[I love Evian ever since we visited the source of the spring in the 1970's].  I think Evian is cleansing. I really do.  It has properties, I am sure of it, that heal. I feel different when I drink it. We have filters on our sink and refrigerator - freezer for the rest of the water.

 

All afternoon I slept.  It was so overpowering, after we got back into the house.  Even my lists of things to do couldn't activate me.  I went into  another world, laid down on the sofa and stayed there for 4 hours. Or so.   The body really needs the sleep to repair the damage done.  And you have no choice but to give in.  It is a bigger force than anything I ever felt. It is not refreshing sleep either.  You don't wake up feeling good. 

 

By this evening, I had enough energy to sit on the patio so Dolores and Arthur stopped by for a dip of ice cream.  She brought Magic Shell and I had these chocolate 'shells' to put the ice cream in [that of course - are edible].  She and Alan did all the talking.  I wrote an occasional note.  After a half hour, my eyes were at half-mast. But at least we did something.

 

Barb-eeeeee-cutie

 Another day, another treatment.  I never count my radiation burns, before they blister [a new axiom]. But it worked today and I was well enough to go through another one.  Here is the mask:

http://www.belayne.com/1.jpg
 

Smothered in Kohr's - that could be healing.  Milk is good for burns, I read.   They are starting to burn me again.  After only 2 - they are so cumulative.  

  The drs. say, after they saw my reaction last week,  to avoid even herbs and vitamins that are  usually safe, for me to take, may react in me now.  Have to be careful with bath soap and detergents in the wash.  They don't even want me taking vitamins because just as they feed your body building blocks, then it will feed cancer cells.  This is all new theory. 

6-26-02

 Every dose should be tailored to the patient.   If they can put a man on the moon,
then they can improve on this.

 

I am just so sorry to read about how debilitated you are.  You really
have a sympathizer here, in me.  It is ironic you wrote you feel like a
dishrag.  I was writing notes to people on Sat. and when they asked how I
feel [they just don't comprehend],  when I said I feel as if I were run over
by a cement truck.

 

The effort to talk is unbelievable, so I understand that too.  But since I
have no voice, I am not supposed to even try.  Though I often get off a few
whispers, I can't project my voice and am tired of people saying 'what?'  It
is so hard to say it the first time; and to see people is so uncomfortable
and makes me tired.  And then to converse - it is tough to write, get it all
down, and not get more tired.

 

Funny, how I've used the term B.C. a lot for months now.   It is scary - we
think on the same plane. You're very perceptive and so right;   it is too
long feeling this way that we still can't believe it is us.  I guess our
brains are trying to protect us in some primitive way.  So maybe that is
good for now.  The mornings are always bad too, for me, because I feel
worse - does your esophagus ache more when you wake up [it may be getting
dry at night so we use a vaporizer ---cool mist].   We just added benzoin to
it - to help.  I am checking into LYSINE supplements [and zinc] - we always
take them when we get sore throats and they help so we wonder if they'd be
useful here.

The pharmacist said to drink green tea, also, for the esophagus. Did I tell
you about the great pharmacist in A.City and he has a store on Tilton.  He
is from PCPS, where I used to work.  He is a big secret down here; my
kickboxing teacher introduced us and he has amazing tips and tricks.

 

I don't think you can ever get used to pain and discomfort and it is even hard to imagine a
time when you didn't have it or even look forward to a time when you won't be 'feeling' some part of your body.

 

We are blessed to have Prince Charmings thru thick and thin.  A lot of people are very shallow so the guy is no big loss, though she doesn't need those emotions now, too.

 

Attitude is half the battle.  So let's concentrate on the positive as best
we can.  That is good keeping the sense of humor with the shots of botox
'joke.' One person told me at her chemo joint, they all sit with cell phones
and their lunches on their laps.  I don't think it is that simple for
everyone.

Along those lines, I am getting free dermabrasion.  They are radiating about the chin where there is light   light blonde, short, peach fuzz under my chin.  With the radiation burn, it is burnt off too. Maybe it will never come back.

 

I am off to try to make a chocolate layer cake to take tomorrow to the gang
at the hospital; they have been so good to me so they deserve a small treat.
Alan made me a special tee shirt to wear that says 37 down with 0 to go [and
it has my photo on a barbeque spit] with the drs.' names and 'well done.'

Keep up your spirits and know you are in our thoughts and prayers all the
time. May the daily tortures end and we enjoy recovery soon.

36 down and 1 to go

 

I asked them to give me both today but they just laughed.  My neck is feeling very stiff and hard to move; it has taken about all it can take.

 

The other thing that boils me is people can only talk if they touch you. It is hard, to sit in discomfort and then to have people do things like that.  Just everything hurts and I just wanted to be.

Anyway, it is time to see Dr. Brady  so we are coming up Tuesday, July 2nd to Hahnemann for a dr.'s appointment.  It is at
11:00 .  We wanted to try La Creperie  on 1722 Sansom for lunch since before this shit all started.  I am not 100% sure how long the visit will take,  but maybe we can arrange something.  I haven't seen a lot of people in months nor have I been able to eat out so we thought we'd give it a try.

Love,

 

Alan called this past weekend to thank you for the great card.  I hope with everyone's help [and the devil in me ] we must have exorcised those demon cells, by now,  so they be gone forever.  Thank you for standing by me this whole time; you have been unbelievable and your faith unwavering.  Very few friends like you around.  A friend suggested a medal for my body.  The Olympic Gold Medal Champion of the Linear Accelerator  [as per my friend Miriam - she does come up with the monikers] - may I never lie under it again.

 

So I will be vigilant as long as it takes since I never want to go thru this hive-thing, edema, and wheezing ever again.  One morning I thought I'd need a tracheotomy, the trachea was so constricted.  We are not going to any extremes, but I know a certain person thinks so [she rolled her eyes when something was said].  We warn to keep a safe distance [she is always near grandkids and that means she has tons of germs I don't want].So she rolls her eyes.  Screw her.  Some day she'll learn the 'drill.'  One out of 2 people here get cancer. So sometimes it is easier just to stay home.

 

 

Like you said, it is too far away.  People have said the same to us about a vacation. They mean well, but we are sooo not interested.   We just love being home [we strove our whole life to get here] and wouldn't trade the comforts for a dirty hotel room anywhere. Luckily we both feel the same way.

 

We did our share of traveling and now want to enjoy our area here.  This could be a vacation when I heal.  So far, it isn't.  People come down, that  we know and THEY are on vacation.  They walk and bike and have tons of fun on the beach.  I really miss that.  There have been so many restrictions on me and then not feeling good, that half the time I don't feel like I am even here, let alone at the shore.  And I start to resent all the people to call me up to cheer me up by telling me all the fun they are having, without a thought how to include me in it, even for a while. 

 

 For example, the dr. said I could try to bike for some exercise. So we told our 'good friends,'  [she's another story].  We were going to go about 7:30 P.M. after the sun went down some since I can't be in it.  She whined how  they go in the morning. Like she couldn't readjust her heavy schedule one day for the cancer patient.  She can be nice and do other things, when it is convenient and doesn't interfere with her mah jong gameS or bridge lessons or eating out. Guess you get the picture.

 

Sometimes I go into this protective state where this isn't even my body experiencing this.  It may be primitive but maybe my brain is trying to protect me somewhat.  You'd think with all we've been through we shouldn't have to pinch  ourselves to confirm that this is really happening to us and not just a bad  dream that we will awaken from.
    

6-27-02

 

So did you hear the Olympic theme as I approached  the finish line.........................the crowd is
cheering....................................I am  almost there.............................
hip hip...............................................


I'll send the rest of the cheer someday when I feel all back to normal and healthy again.

 

  Thank you for the 'music' to march me forward.   Just not getting too exuberant; remember Mommy didn't have any problems till a month or so after she stopped her radiation.   Then she bled to death.     I am glad they are more cautious than my Mother's drs. were. In 1972, they over-radiated her for lymphoma [she was 49].   Last night I woke up coughing and choking so bad, I was gagging.  It was scary until I took some cough syrup with codeine and it calmed me down a little.  The whole inside of my neck is swollen and pressing on every other structure; I didn't even want to go today but Alan prodded me out of the house.  I hope tonight is better; I couldn't handle that again.  But those last 4 did a number on me.

37 DOWN & ZERO TO GO.   Alan made me a special tee shirt to wear today to
entertain the masses at the hospital [everyone there was counting down for me, including the security guards, elevator attendants, etc.].

Here is my special tee shirt that Alan made

 http://www.belayne.com/oldtimes/bbq.bmp

6-29-02

The current Marshall Plan for July is this Tues., as you know to start with Dr. Brady at Hahnemann.  Then next week we come up to the surgeon.  The week after is back to the hospital here for the radiation oncologists to take a look at me and prescribe all the scans and tests I'll need for July.  Then we'll plan the next strategic steps after that.   Very creative.   I guess I have to designate my Attorney Generals.

 

 I just want to enjoy peaceful times before my next siege, whatever God has in mind

 

Something strange but wonderful happened.  Last year my impatiens must have gone to seed; this never happened before - ever.  So this year, when I have no energy to plant my border of annuals, the impatiens are just popping up all over -1000's of them.  Instant garden.  Another good omen.  It is early, but our mums are flowering too [we have yellow daisy - like, purple, etc.]

 

Velvet-skin Barbie

About 48 hours after my last sizzling, it hit me today.  Not sure what hit me, but something hit me.  Hard to explain.  It 's just that technically, 'they' are done with me and I am on my own now.  I am free of the al queada [a la my friend, Miriam - she's the one who likened it to war and everyday sent me war memos] and hoping they never come back or any of their damn relatives. We will set up  'look out points' and be vigilant.  But the rest is in God's hands.

 

This week people have been amazing and were still doing such nice things for us.  One summer neighbor brought us a huge bouquet of gladiolas . Later the door rang again  and the neighbor down the street sent in dinner for the 7th time [they are going away this weekend and wanted to be sure we had food]. Alan's been telling them that they don't have to do this.  But then she sends double.  We are going to go to a florist to send them a bouquet of  flowers.  Today 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.

It was nice getting in the car yesterday and NOT going to the hospital we went to Goodwill and took a lot of donations I gathered over the last months.

While it was cloudy in the afternoon, we took a short walk on the beach [I still have to keep covered up - up to my chin - things don't change too quickly]. That was part of the Marshall Plan -  get the body back in shape again after months of laying flat most of the day.

The "Current" came out and I had a letter to the editor in it. Last week they did a story on how the Mayor of Longport hired an animal control officer to fine people who take dogs on the beach or walk them off the leash.   

But today the phone has been ringing off the hook [poor Alan].  People love the letter and say I should be applauded etc.  The President of the Marven Gardens Association wants me to get involved in their project.  Alan said "The Bitch is Back."  I don't feel any better or different yet from when I was getting the treatments, but my mental outlook has  improved with that publication.

 

Like you, I don't go anywhere without water and ice.  It is by the bed at night, too.  And I like getting in the car with Alan and being driven somewhere, almost anywhere.   Right when this all happened, we had just picked up a new car, and I really haven't had a  chance to drive it yet.  But I love sitting in it and smelling the new leather.

 

The pharmacist is Steve Chang and it is Essential Elements on Tilton Rd. and Parkway Pharmacy in Atlantic City .   He is an expert in pharmno-biologicals. He teaches seminars and sees people privately.  When I told him I was the chair at PCPS in medical technology, he refused to charge me - he called it professional courtesy because it was his alma mater.  Another way someone helped out.   He is so knowledgeable and careful.  He doesn't want to do anything that would conflict with the medical experts I use.  The first time
we went to see him, there was a line in the back, by the pharmacy.  It looked like something out of a movie.  At that time, I didn't know he was a pharmacist.  Since then I have heard his name over and over again, from people in the gym to the residents of Linwood.

There is also a macrobiotic cook here that will bring you meals.  All kinds of auxiliary people -  from lymphatic drainage massage to sacrocranial therapy.

 

6-30-02

I am not healing quickly at all; in fact, as the weekend wore on, I feel worse.  My esophagus is killing me; I guess those 4 treatments in a row last week are catching up with me now.  They really caused damage.  Probably while I had off 2 weeks, the new cells inside started to regenerate some but when they started burning me up again, the new tissue just fried away.  Too new to be 'calloused' or hardy. 

 

Today we had an engagement party to go to and we went.  It felt good to get out again. I took a tablet and wrote notes to everyone I knew there.  I'd recycle the notes to the next person. The food was great.     Too good - I ate too much ---not that I was full ------that is no longer the problem [I can't eat enough to get full; I only get so many bites down before it hurts the raw esophagus tissue].  So the pasta and desserts and omelets were so good that I ate beyond the point when it hurt and now it is very sore.  So I guess that is a compliment to the chef.  Healing is sooo slow. Since we have been home, it has been excruciating.  

 

And all the tissues in my neck were so burnt that they have edema [it feels stretched to the max - like someone is squeezing my neck with their hands or someone wrapped my neck in tight cellophane].    From what they told me, the swollen tissue is pressing on my vocal cords, preventing speech.  The swollen tissues are pressing on my trachea and esophagus so when I try to swallow it doesn't go down and I choke.  All day I choke unless I stand up perfectly straight - I have a very narrow window of comfort.

 

The outer skin that is new is very soft.  The color is bad and it is burnt again after last week and has hives in places, still, but you can tell some of it is new and that is why I called it velvet. 

7-1-02

106 hours since it ended but who's counting.

Thanks for focusing me;   yes, at least I could go to the party.  Though I did have to force  myself up and out and to get dressed.  It would have been very easy to stay home.  Especially since it was over an hour drive each way.  But the new car is comfortable.  


Before I forget; here is a funny addendum to my dog letter to the editor. A friend down here called Alan and said he heard that I was instrumental in getting the police to hire a dog control officer.  Now for some odd reason, I am getting credit for all this. Geez, I am almost a hero here.

 Yes, I'll be very glad to see Dr. Brady.  Like you said, maybe he'll suggest something that will give me some relief.  I have tried almost our whole arsenal in our medicine chest.  Advil helps the throat pain some; I hate to take the aspirin with codeine they gave me. It causes me great grief with its side affects.

All this RX stuff is getting to me; last night I had one of your nightmares.  I dreamed I was back at Harding Jr. High School teaching and it was the first day.  The worst part, was my handouts weren't duplicated and I didn't have anything to give the students. I couldn't find the lab assistant to help.  So it was a mess. Teaching never leaves us.

Did you get the calla lilies and their pretty friends... one photo has the weeping atlas tree in it.  The one shaped against our fence.  Isn't it spooky looking - like it looks like an animal.  I like your covering the
berries with sheers.  Cool idea.

37-star general barbs

 

7-2-02

We had our visit at Hahnemann; it was terribly exhausting.  Not just the drive but the dr. who is the head of the department brought in 3 residents with him.  It was disappointing  too because I had hoped for some magic medicine.  He said all my terrible side affects are those that people get who have my type of radiation. And all the medicines I have are all they can do for me - I just have to allow the time to heal.

 

By the time I walked to the car yesterday, I felt terrible - guess I am trying to do too much.  It was exhausting.  I am not used to even sitting up that long a period.  What really upsets me, is I actually feel worse each day.  Several times since we got home last night , I   coughed so hard that I can't catch my breathe and I wheeze.  And my esophagus seems to be hurting more and more.  I don't get it.  Tomorrow we will call the drs. here and get their opinion.  I am miserable.

I am in a fog.  If we hadn't already made plans to meet my sister and a friend at a creperie, I would have gone straight home.  But we went and it was too tiring.  I still can't talk and writing notes makes me worse.  The food is good [what I could eat - I brought most of it home]. 

 

When we got here a neighbor called to invite us over - she was barbequing for dinner [I hate that term now], but I couldn't get off of the sofa for about 4 hours.  I can't stand feeling this way anymore, and really need to start feeling closer to normal than further away from it.

 

It was wonderful of you to find the formula and to compound the mouth wash for me.  In comparison, it may have worked a little better than the original formula [though not for a much longer period of time - if they can send a man to the moon, you'd think they could invent some medications to alleviate cancer painlessly].   The only problem is, it totally took away any appetite I had left.  I kept trying it but it happened every time.

 

 I have been drinking green tea every day.  And I have tried the Celestial Seasons throat soother tea [with slippery elm]. The teas feel good going down and  do have a nice temporary positive effect.   I am not healing as quickly as I had hoped; in fact, as the weekend wore on, I felt worse.  It is 5 days since my last treatment.  I still have no vocal cord action and my esophagus is red and raw; It is like any body part, I guess.  Take a foot...it gets a callous and you don't feel rubbing there from a shoe.  But if the callous is removed from the foot dr., you feel the shoe rub.  So if you know of anything else they can prescribe for me, I'll try it.

 

  7-4-02

We did manage to go to the beach for about an hour; Alan Zakuto called us
with a beach report and said that there was a breeze.  Our other friends had
the lifeguards put out our chairs and umbrella so I just had to navigate the
sand and plop down.  It was refreshing and at least a change of scenery for
a while. I take plenty of paper and a magic marker to communicate ---when I
feel like it.  But I prefer to sit and read my book.

I didn't have to cook dinner either; our neighbors catty corner across
Ventnor Avenue are really very nice and said they were barbequing and we
should come over and get something.  The ones from the other night... when I
couldn't budge off the sofa.  They are so helpful; she had breast cancer 3
years ago.  So we went over [mainly for Alan to get some decent food].  The
thing that went down the easiest was corn on the cob.  Go figure.  Potato
salad hurt.  Kugel hurt. Hamburger hurt.

 I think I had too many 'bites' of dinner.  It is so sore now.  I could have
eaten more - I was hungry - but the pain prohibits that.

Now I am zonked.

 
That was funny; you made me laugh.  I do know one of the ingredients in the magic mouthwash is a bit controversial these days.  The misoprostol seems to cause abortions and many countries have been using it for that purpose.   It would have been nice if it had 'aborted' my esophagitis for me.

 

Have you ever heard of using Lysine for the esophagitis.  For years, whenever we get a regular sore throat, we'd take a few and it would help shorten the duration of the pain.  Now I wonder if it could help the esophagitis, too.

 

And another product we used for coughs and sore throats was Loquat syrup.  Now again, I am thinking maybe it could help my radiation cough and esophagitis. 

 

Yesterday I saw the radiation oncologist at Shore Memorial because I was wheezing, increasingly. It will be A MONTH, they said, at least, before I notice any improvement since the radiation stays in the body and continues to kill the cells [good and bad]. They said I will still get a little worse before I start to get better because of the continued action of the radiation. In addition, so much damage was done, already that the tissues are swollen beyond belief.

 

I am in such a hurry to get back to my old normal self since this all has been going on now for 6 months; I feel like I am out of patience.

 

Hope you had a good 4th,

 

7-5-02

 Aloe is DEFINITELY the drug of choice.  The radiation oncologist told me to start putting it on my skin, starting at day one.  Can you imagine how bad I would have been if I didn't use it at all.  He also said to get the  cortisone cream WITH ALOE, which I did.  The Hahneman rad. onc. gave me a cream with avocado oil in it PLUS SQUALENE [shark cartilage].  It is my preference to have drs. who go back to basics and use naturals as much as possible.

 

Feeling no better on Wed., I like to check out every opinion given, so Alan got me an appointment with the radiation oncologist here.  When the nurse heard my symptoms she was stumped because no one else reacted this way.  But she admits I am very different ; she knows me such a short time and is attuned to my sensitive body.  The dr. heard the wheezing in my lungs and ordered a chest x-ray; it was fine so he prescribed some potent cough syrup.

It is ironic; Adam wrote me "isn't it a little too soon to say you're not healing quickly?"  And the dr. said the same thing, and his nurse echoed it.   Most people don't know this and can't understand why I'm not going to parties, etc.  ].   Basic science; radiation has a half life.

   

7-6-02

 Somehow, we got on the committee that is fundraising for the new building.  One night, we went for a half hour [seems to be my limit] to a dessert party. It was my first 'public appearance' on the day of my last treatment.  I really forced myself.  It was a bit awkward - all new people, and they put their hand out to shake and I have to refuse.  The host did some covering but it was not fun.  So not me. 

 

Aloe is like a miracle.  When I was at the herbal pharmacist I bought
INTERNAL aloe also,  and it comes as a liquid in a jar.  I have been looking
for it for a year.  I figured that maybe it will help heal my esophagus but
it hasn't done anything yet.  But I don't take it regularly; something about
it upsets my system.  Now is not a good time to try new substances.

Maybe it is called the morning after drug.  Could very well be. This morning I felt lousy.  I tried to ride my bike [I know, I know - it may be too soon].  My mind runs away with itself of all it wants to do.  Like a kid.  SO when I came home, I just kept coughing too much.  To the point of gagging.  I hate that swollen tissue and hope it diminishes quickly. I thought I'd stay in the whole day.

But by mid-afternoon, I felt better and I felt 'left-out.'  From our window, I saw people streaming to the beach, biking, walking, skating, just the whole town is alive.  So we went for awhile too.  To our beach at the end of our street.  A few friends came over to visit from the other beach where we normally sit.  So with some of them  I ventured off my derriere and took my first walk on the beach for a few blocks. It felt good...I like to walk barefoot in the edge of the water.

We saw neighbors and friends as we strolled along, all very supportive of my plight so that was very nice.  Alan does the talking; I write a few notes.
Beachcomber barbs

 

7-7-02

By the time I went in for surgery, I had to stop the neurontin and have not started it up again [and hope I don't have to].  When I first started the radiation, the mask they made for my head that bolted into the table was so tight it pressed on my trigeminal nerve and I was frightened they started it up again.  I made them cut out that part of the mask to release the pressure.

 

We  try not to do things  centered around food. We purposely don't eat
dinners out very often [B.C.].  It seems strict  but since I can't take the
cholesterol medicine, it is best not to be around all the wrong foods.  I do
better at home.  Alan and I wrote a book on how to lower cholesterol [about
12 years ago - what an embarrassment, telling others how to do it and mine is
in the upper 300's].

I read what you read about laughter reduces your chances of contracting
cancer so tell me what happened in my case.  We are laughing hyenas here [I
only watch comedies] and I still get it.   I guess it could be worse, if we
didn't laugh.  We heard of a girl on the beach who is 39 and had an
operation a few weeks ago for a brain tumor [benign - they didn't get it
all - too deep] AND they discovered she has breast cancer.

Exercise also releases serotonin in the brain so we are trying to get me to
do something every day, no matter how tired it makes me.  The drs. suggested
I go to the gym and do light weights even if I sleep a lot later.

BY WAY OF THIS EMAIL,  I OFFICIALLY PASS THE TORCH TO ROSALIE COSTIN.  Maybe I can give you a lucky amulet next time I see you for your 'torch.'


Actually, this is a bizarre story, but years ago when our nephew Adam was at Univ. Of Delaware , we'd go and take him out for lunch and walk around the town with him.  We all bought amulets at a store on Main St. Mine is the Seal of Solomon and the description of it does go back to biblical times. Anyway, I had it a little while and Elaine Sweig [you know her from the Sea Cove] got lymphoma.  So I gave her the amulet and she went thru her treatments and is in remission.

One day when we came home from the hospital, among the envelopes in our mail, was one from Elaine.  It was very nice.   She sent me back the Seal of Solomon and hoped it would help me, as it brought her good luck.   If you want, I could lend it to you for your last 3 treatments.

You  have  been "through the mill" too.  So maybe now your luck will change for the better.

My mother's 'lymphoma' [my drs. aren't so sure that is what she had - I got her medical records for them to review], was tough on all of us because my sister was 21  and just married.  When I was 21 and just married, my father died [he was 45].  ANd a month after my mother died, Alan's father died of cancer at age 50.  So our entire philosophy of life was changed in our 20's and it shaped our entire life. We feel - it was for the better. We have no regrets about decisions we have made.

Though sometimes, I feel like times have not changed too much since my mother's treatments.  After all, my cancer is so rare and there is no real tested protocol, so it is like guesswork, in a sense.

 

You sound like me - all of my life I have done my own thing, like you, but now I just want to be normal, too.  Enough of being different ---this was tooooo different.

We are slowly trying to get back to that old life so we just sent away the forms for the federal I.D. number so we are on our way to beginning the foundation.  When we get that, there are so many other forms to complete but we will continue.

ANd we have to force ourselves to do normal activities.  Healing is sooo slow. 

 

I know exactly how you feel about not caring what something costs; mine 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.