August 9 to September 11, 2002

 

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 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.  

 

8-9

We had to drop off scans at the radiation oncologist's so while we were there, the nurse at the  hospital was nice enough to  look at my arm today. They are always baffled by my symptoms; no one else gets what I do.  We'll give it a few more days.

8-12

You are so astute, Debra - - - yes, the show wiped me out.  I have been doing way too much; the radiation treatments were only completed 5 weeks ago.  But my mind and body aren't in sync.  The brain says it wants to do this and that and then my body just can't carry thru.  I am not used to sitting around.  Not my personality. This recuperation is really slow.  Now I have had really painful skin to the touch - very weird because it isn't where the radiation was given.   Usually the liver and kidney can handle  the daily normal cellular breakdown. I remember teaching the biology classes how everyday they have millions of cells [including blood and covering cells] that die and each day, if they are healthy, they have new cells being produced.

The volume of dead cell waste products just backs up until the body can remove them.  They can clog joints and muscles causing pain.  Sounded just like the phenomenon in many hematology conditions, the classic one being sickle cell anemia.  When the poorly formed blood cells die, the patient gets severe crisis's in the form of pains in the joints and muscles,  where the dead blood cells collect until removal.

8-14

 It is good to be home and resting now.  My physical therapy is taking on a  new dimension now.  Since I only have one jugular now and can't push it like  I used to, they want to try to improve on that.   Now, to encourage new  vessels to form, the doctors encourage that I should cycle,  walk, use the  rowing machine, etc. a little bit, if I can.  So that is the next step of  the physical therapy.  I can embellish my routine at the gym - maybe start  with 5 minutes of something and improve on it each week.  Tiny baby  steps...we started this evening.  

 

8-15

It was just a lucky coinkydink that you and I timed our visit there and we got to see each other for awhile.  We made sporadic visits to the exhibit since there were various things we had to bring to different people and then Alan would take me home and go back.  I was dragging by Sunday afternoon; and I admit I tried to do way too much again.  I don't proceed to learn [that is how I used to describe the slow kids I taught].
But as you know yourself, it feels good to enter the normal world again and if we stay there, even though it may be too long, we feel like we will absorb the normalcy through osmosis and make us whole again.  Silly creatures.

I marvel at your letters and emails of all you do, especially those looong days with your sister.  I don't know how you do it.  After I am out a short while, I long to be home and comfortable.   Though we were never one for marathon days away.  We did so much of that when we were younger and now we just cling to the nest more and more.

Today when I looked in the mirror, my neck actually looked worse.  We were just at the hospital yesterday and the dr. looked at it.  He said it was swollen still.  As if we didn't know.  Sometimes it feels so uncomfortable, like they left something in there - big. It is hard to describe but it presses and makes it hard to eat and swallow.  It is nerve-wracking seeing and feeling all these new lumps and bumps.

 

 8-16-02

 

The new routine pooped me out - wow am I tired. I am just sitting here in a
stupor this afternoon.  Maybe I overdid it a little but I was having fun.  I
went to Lorry Young's aerobox class for 20 minutes.  She has been such a
pillar for us, also. 


The people we have met here in the last few years, like you, have been so
wonderful - some more so than old time friends.  It is so touching...we
realize that the smiles, kind words, and prayers from everyone was the one
major gift we received throughout all of this. 


Last night, our friends,  invited us for dinner; she made all soft thingies for me.  We looked at the video from the first daughter's wedding, which we went to .  They saved a souvenir for us from the wedding last weekend that we couldn't make.  It was very nice; two other couples volunteered to give us their souvenirs too. Suddenly we know so many very nice people.

 

What I was trying to say was the  dead cells are broken down by the body [it
happens every day normally] but now my body has even more dead cells to
contend with since the radiation did an onslaught.  So the body can't keep
up with the waste products that are produced as the cells die and break
down. These chemicals are toxic to us in large amounts.  That is why cancer
patients getting treatment are so tired, etc.  And in other cases, they may
react to the waste products, like an allergy, or auto immune disease, until
the body gets rid of them.  It can accumulate in the skin or the muscles.
Not much to take for it because they don't want to interfere with the
process.

 

8-17-02

In answer to your question, we had a lot of Chinese food during the worst of my bombed-out esophagus.  There is a great  place here that makes a mean wonton soup - the wontons are actually like my late Grandmother's kreplachs.  I am kind of lo meined-out now.

 

Glad you appreciated my mask.   I started this new line of Cancer Chic Barbie Dolls - come with this little Bejeweled masks! [or a turban if it is a chemo treatment]  It's what all the fashionable cancer patients are wearing these days!  Cripes ---I am so warped.  Maybe they radiated my cranial nerves by mistake.

 

As for what the drs. say about my healing and follow-up tests,  I made my next set of appointments which are for end of August [which is only 2 weeks away].  I go back to see the surgeon at Temple on Aug. 28th and then the next day to see the radiation oncologist here in Somer's Point.  Tomorrow we have to pick up the CAT scans at the hospital here so I can take them and the report up to the surgeon.  And a PET scan will be needed in October. It is a new technology and a BIG one.  That is a nerve-wracking but telling test; it sees cancer on the cellular level so you pray it does NOT light up at all. 

 

I need a round of blood tests too - see how my liver, thyroid, and blood cells are doing.

 But the drs. say the CT scan came out fine 2 weeks ago and all this is the effects of the intense radiation and extensive surgery.  The surgeon called to reassure me; thank goodness for good doctors that keep us in the loop.  We email them too so they are always accessible.

 

A small world it is, these communities down here.  At the Art Show in Longport, Alan was talking to a man that used to be on the zoning board with him, but he had to step down a few months ago.  His 26 year old son got lymphoma and had to be driven to treatments, etc. [well, we all understand that now].


Anyway, Alan brought him over to me, after he caught Roy up to speed about my status.  And his wife Barbara came over.  At one point they said there son had finished his radiation and wanted to surf again.

A light bulb went off in my head.  Each week we pay the Margate lifeguard [Steve Swift] - where we sit - to stow our chairs in the beach shack so we don't have to lug them in each time, the 7 blocks,  from Longport.  The first week we didn't recognize him since he shaved his head.  He told us about his friend who had cancer and how he 'lost' the hair in sympathy for his friend losing his hair.   And every week since we have been comparing cancer notes [moi; his friend].  The other day Steve said how his friend just went surfing.

So I asked  Roy if his son was friends with Steve  and he said yes.  I said to Roy, we have been hearing about his son's progress all summer.

Another thing hit me while we were talking to Roy and Barbara.  I need to find out what is the acceptable incidence for cancer in any given community. It seems like Longport has TOOOO much.  Then if that is really true, I need to find out why a majority of the houses here have someone with some type of cancer.  A new cause.  They are beginning to stack up around here.  Maybe this is why God picked me to have this thing.

 

8-17-02

They had to take out my left jugular vein because it was intertwined in the mass.    I miss it very much.  If it had been outside of the tumor, they could have saved it but the mass grew around it.  We are lucky that no other major nerves were involved - I could be a veggieburger.    And they also took out a major strapping muscle ---the sternoclavomastoid ... or something like that.  That is why I can't turn my head certain directions and need so much physical therapy.

 

You are correct - it is definitely fibrosis or adhesions or some kind of residual surgery and radiation damage in my neck.  They say it usually doesn't improve but gets worse over time hence the need for constant physical therapy.

 It has been a long haul here but the radiation therapy is finally done... it has been 6 weeks now since the last one.  37 treatments in all.  The burns were so bad at one point, Alan wiped black ash off my neck. And since they burnt my vocal cords, I couldn't talk for about 4 months, nor swallow or eat or drink much since they severely burned my esophagus [the surgeon said it is as if I drank drain cleaner...lye].  They had to stop treatments for a few weeks.   It was worse than the 9 hour surgery to remove the mass.

 

Healing is a slow process and the drs. and nurses warned us of this. Lots of physical therapy, speech pathology, follow-up CT scans and blood tests, and whatever they can think of.  The cancer is so rare that only 20 people in the world have it and there are no established protocols, like in, for example, leukemia or breast cancer. We have had to seek dozens of opinions all over the world, to be sure we were on the right track.

 

Thank you for offering to help with our foundation.     You are so sweet.  As soon as I figure it out, I will yell and take you up on that. Getting started is always the toughest. We haven't even gotten to making literature up yet.   The manager at our bank in Margate put us in touch with another lady in Margate, who is starting a foundation for a disease that killed her husband.  She is up to making the fund-raiser dinner so maybe she can guide me thru some of this.  She lives a few blocks away, ironically.  We know a few other people that make fund-raisers that can give us guidance at the correct time.  And all our drs. will help with the medical aspects, they said.

 I may be a bit crazy these days, but we can rent the house next door from
the owners.  They usually only do a whole month but it fell through this
year so they will consent now to do it in shorter increments.  So we have
had enough people that will share the rental for 2 weeks [a long story] with
the thought that we'd get to see some people we don't see a lot. Practically
everyone we know now has a condo or house here at the shore so it is not a
problem seeing people we left behind up in PA.   The people coming down
would have their own space and not be in our house underfoot, and they'd be
on their own schedule to do as they please.   At this point of my
recuperation, I don't handle guests well for too long.   Laissez-faire.

 My sister is coming down  next weekend; she has some friends in the next
town and will make plans some of the time with them. It should be fine.  I
told her we can have breakfast together or not; sit at the beach together or
not - whatever she wants to do.   Whatever I can do.   The following weekend
Lucille is coming with her husband [ before she starts the treatment for her
re-occurring cancer - her PET scan came out with the report that NO organs
are involved so that is good; bad enough her entire spine has it].  Gail [my
former 41 year old student with breast cancer] may come down with John, too.
This is giving me the idea that the house may be rented to become a hospice
at some point [through my foundation ].

It is not good for me to get upset or annoy my immune system any further.  

 8-18-02

Maybe we can get it passed  The E.M.A. - since it is a few months till election day.   I am going to get a new bill passed - my Equal Moron Amendment..."all morons should be treated equally!!!"  

 

Speaking of morons......we saw Sheryl today .  We went to the beach for a little bit since a friend called us and said it was cool down there.  Harold and Lori sat with us.  So she waddled over and only said hi and gave me a thumbs up ---she was biting her tongue not to say what she was thinking [she almost started me up with "how's everyone - you're all good?"]    I just stared and thought, Yeah -  for as good as you get with cancer and radiation burns.  Harold and Lori just stared at her too and couldn't believe her.  No one talks to us the way she does - she is a real moron.  She just doesn't think at all.

 

We are not really sure if losing the muscle will affect my appearance much [it is too swollen in that vicinity now to tell].  The surgeon said it could kind of cave in and I'd look lop-sided but if EVERYTHING else would be ok, then what do I care.  It is like the scar - if it becomes ugly, so what.  I just want the al quaeda gone forever.  That is all we even think about with this whole ordeal - I did everything to give them the death penalty, even sacrificing my health - so nothing else matters anymore.  Just begone and never come back.

 

Someone I met today while we were walking to get a paper stopped us and hocked me to death.  I am beginning to hate Pollyanna-type people with a passion.  First she starts gushing how I kept my figure [like this would be my number one priority, right?].  Then she continued with how wonderful my first CT scan result was and HOW did we celebrate. She went on about how SHE would celebrate.  I tried to tell her about Lucille but she just loved the sound of her own giddy  voice.  She was in amazement how my voice sounded almost like the old me and went on about how "you are all better."  It was to no avail to tell her about the painful skin and my swollen neck, etc.  I finally walked away saying I had to get out of the sun.  I hate when people try to minimize what I am saying. And it is only a tiny percentage of people that do that but nevertheless, it makes me leave for better territory.

 

BARBS, the moron hater

  Enough already! You must really have felt like you were on the brink.  I remember saying for so long, "this has got to be rock bottom and now we can move upward."  And it didn't happen but things kept getting worse. I wondered if there would ever be a bottom to hit so things could turn around already.  It is such a gloomy, dark feeling, wondering when.......

 

8-19-02

Therapy continues every day, even weekends [I can do some in the house since we bought the special 'rubber bands' and huge ball].  Alan learned to massage the scar and do the physical therapy on the neck muscles in various directions.  The rest I can do in the gym since the physical therapist worked it out with my personal trainer and drs.    Some days the therapy seems to ease the pressure, for a short time; other days, it doesn't do much.  And it tires me out like on the days when I had the radiation.   Or maybe the tiredness is still from the toxins from the dying cells.  Whatever - it's at the point where you don't know what to expect each day.

 

 

Don't worry, I only do what I can do. I stop as soon as I start to feel too challenged.  The endorphins produced by the exercise, do make me feel good, for a short time afterwards, though.

 

8-21-02

Your support groups sound helpful-that is great how it isn't a complaining session. It seems like a good cause to get involved in.  There seems to be so much good that they are doing.  I don't know if the ones here are as philanthropic - only once I heard some of the members talking and I knew I didn't want to spend any more time with those ladies.  It was too upsetting what they were saying so I figured their meetings were more of the same.   We have always been involved in volunteer work in some way, though, so we figure starting the foundation should be a good start.

 

We already sent our first official letter out.  We sent it to the Mayor to see if our Foundation could donate a shelter on the beach for cancer patients to use when they are getting treatment and have to stay out of the sun.  There is absolutely nothing  down there to protect them.  We'll see what happens.  We found out this is not local law but has to be approved by the State since the beach is state land.   It could look like a gazebo or a
Tiki hut [you know, a thatched roof with columns holding it up].

 

We have been sitting on the 34th Avenue beach - it is so much less schlepping for us, less carrying lots of the extra things I need nowadays, and much much quieter.  And I am so much closer to our house, for when I need something.  I really can't have my neck in the sun yet.

 

I never know what is going to wipe me out.  I have been doing way too much; and of course I wouldn't go on a roller coaster or any thing that could jeopardize one cell of my body.  My mind and body aren't in sync.  This recuperation is really slower than I thought and it is tricky - I never know what will happen next or what side affect will manifest itself. The drs. said this is a life-long problem

 

We were talking to a young man in Longport that had cancer years ago and now he has heart problems, which the drs. at HUP think originated due to the type of treatment he had for the cancer.  We hear this over and over.

 

8-22-02

I barely have the words to say to you except ,HANG IN THERE BABY!  Just take one hour at a time. That is what I tried to do.  And someone who is in remission from lymphoma said to me if you need a 'day' to yourself, then take it.  AND REMEMBER A DAY CAN BE ANY AMOUNT OF TIME YOU WANT ---IT IS NOT LIMITED TO 24 HOURS  so I thought that was pretty clever.

 

8-23-02

I am lucky to be alive.  The drs. were wonderful, all around, but we did [well Alan did], much research ---constantly. I think because the cancer is so very extraordinarily rare, the medical team took extra special  steps to  watch over me.  They are writing it up for the medical journals, using my scans, etc.  Only 20 people in the world have this at the moment.

 

We got 2nd, 3rd......and 100 opinions.  Literally. Drs. from Harvard, Yale, Mayo Clinic, Johns Hopkins, and UCLA called us.  We were amazed at how wonderful they were to take an interest.

 

I was lucky they wanted to help.  They volunteered and we were so touched.

 

If we don't  lose what little minds we have left, I believe that will be our best conquest!  It is mind-boggling to go thru this.  Sometimes I don't even think it is me, I get so out of it.  The drs. said it is a good protective mechanism.

 

Today was much cooler here so we tried to tidy up our scraggly garden a
little.  Plants grew out of control and I don't keep up with cutting off the
dead flowers...no energy for all that so then it piles up. I like to cut
impatiens and put them in a vase and in a few days they root and I have a
dozen more plants.   Then I fill in empty areas of the garden with them.

 

 For the last few days, I've had a new symptom.  I have a tremor-like feeling every so often in my right derriere.  It doesn't hurt, it is just annoying. It is like a vibrator buzzing me.  SO now I notice that it happens most of the time when I tilt my chin down towards my chest.  It will be good to go to the drs. next week and figure this out; I hope it is not something related to my spinal cord getting too much of a dose of the radiation. I didn't go this week because I just don't want to see anyone in the medical field this week ---I need to steer clear of them all for awhile and have a little rest from them and their torture chambers.

 

When the drs. made the plan for the radiation, they couldn't help but go
after the area around the tumor  to kill any stray cancer cells.  But that
area included the spinal cord.  All the drs. felt that the cord was going to get some radiation which is not good.  We were told there could be symptoms soon or years and years later.  So I do have to
report this problem. I know I am going to wind up at a neurologist one way or the other over this.

 

I am now thinking is that my vibrating rear end could be the huge swelling in my neck pressing on something.  I did say last week, when this all started, that my neck has been feeling 'tighter.' 

The side effects of radiation are terrible; they told me I could get breast
cancer from it or thyroid problems.  They said my carotid could be closed up
from the intense heat, and so on.  SO it seemed like we didn't have a choice
as far as treatment are just hoping for the best.

After radiation,  having company down here this weekend is a piece o' cake.
Maybe that is why I had to go thru it. Always trying to figure out what the
master plan was.

 

 I am sorry that you were afraid that I wouldn't be here.  It hit all of us that way; I catch Alan just staring at me [less now than at the beginning].    I don't know if that feeling will ever leave but it does make one feel more fragile and so many thoughts go through your mind.  Will I be here to wear that new bathing suit or necklace, will I be here for another romp on the beach next year...... you're right - the world stands still, in a way.  Rather, I see it going on and on about its business and my life standing still & winding down.  Maybe it isn't right now and maybe I got a reprieve for a while, but in the measure of time, it is only a blink---and then we're outta here!

 

8-24-02

The physical therapy has to be done EVERY day so some days I use the
instruments at the fitness club that I have learned how to adapt for this
purpose.  Then the other days I do the exercises at home, following the
sheets the physical therapist gave me.  Every day Alan follows their
instructions for my neck and arm and scar.  This plus some other medical
checks we have to do is a new way of life for us and something we hadn't
expected to take over a good part of the day.

 

  8-25-02

Getting better is a lot of hard work.  After 4 months, I can now talk again...finally.  And the burns in my esophagus are finally starting to heal and I am eating more now that it is 8 weeks after the last treatment.  If I swallow too many bites then I re-abrase the lining and it hurts again so I have to eat small amounts.  I think I gained back 3 of the 20 pounds I lost so we are headed in the right direction.   Improvements in small baby steps.

 

8-27-02

Someone sent me the cutest card - a totally ugly dog on the front, called "Zelda Wisdom."  And it said "Tough times never last...tough people do. United we stand."  They were talking about Larry and I.  I am waiting for all this to be a memory. And hopefully one day he and your family can reclaim normalcy also.  The beginning is a tough road to steer on.

 

Larry will find the same compassion.  He may have no side affects, depending
on which treatment he chooses.  Tell him that what I did was worry about
every little thing and none of it came to pass.  I had other problems but
not the ones they said are common.  And my therapist said not to dwell on
these 'worst' case scenarios because they usually don't come to fruition.
She was right.

 

Now is not the time for me to get any infection, even mild, the drs told me, since my immune system has been damaged by the radiation and has to heal and come back.  There is nothing there to fight a mild infection, so I was told to take no chances.  And I wouldn't try.  I've had enough problems to last a lifetime and won't tamper with this at all.  They prefer you stay away from people [or wear a mask] but I am banking on people not touching me so I can go out once in a while. 

 

8-29-02

They are still making the calls to get the PET scan approved; that is a week
or so of paperwork.  Glad it isn't an emergencia.  But we knew to start early.

Today was the radiation oncologist's visit.  He echoed the surgeon, especially the opinion that I must constantly do the neck physical therapy or I will turn into a rigid-necked inflexible Barbie doll.  He did say that the vibrating gluteus is a syndrome [I forget the name] from the radiation of the spinal cord.  He will reserve all other opinions till after the Pet scan.  And the blood tests.

Right now I am working on 2 problems that are bugging me - the first is what help is available after the lifeguards go off duty next week.  And the second is trying to deal with a neighbor who got a puppy this winter and now it is a loud howling dog. She leaves it outside for sometimes hours at a time and allows
it to yell constantly.  Needless to say, my nerves are raw because I am still recuperating and require a lot of sleep /  dozing and this animal prevents it by jolting me awake  often. I have said a few things to the owner, in a nice way.  I guess next will be not so nice next time.   She is interfering with my health at this point.  Any suggestions for handling her...

I also am battling hospitals and insurance companies for bills that my insurance should have covered but instead, I am getting dunning letters.  At this time of my life, I don't have the energy to deal with these issues but am trying to make some inroads to  straighten out the paperwork mess.  I'll fill you in on those when I can write more.

It is odd how different things hit you at various times.  Today I was looking at the receipt from my visit to the surgeon yesterday and saw under the diagnostic code "Neck - throat Cancer."  It hit me in a very realistic way that it hadn't before.  Literally it hit me in the gut ---this is "me!"   Maybe I'm only just starting to process all of this.

 

8-30-02

We survived the guests'  visit quite well. 

Saturday we awoke to rain and made waffles for breakfast for them and they took a walk afterwards while I rested [it is amazing how I have to rest after every little thing]. 

 

When the sun came out ,  we took a slow bike ride around to show them some of the big estates down  at the point.   The Z.'s met up with us.   ______ was not interested in the gorgeous ocean and bay views or sailboats flitting around, only what kind of cars were parked in each driveway.  The real beauty of life passes him by for materialistic things.

They went for a drive Sat. afternoon so we didn't see them until Sunday!!!!!! Because by the time they came back, we were getting ready for our friends 65th birthday party.  We got the invitation months ago - for a very old friend.  We enjoyed getting out for awhile [they rented Ozzie's] and I was able to eat a little bit of the great food they had.

 

The comments he says...Alan says I just have  to ignore him.  Like he saw our new car in the garage and he said it was  nice and then added, "but you never indulged yourself in luxurious cars  before so it is about time you bought a car like this; it is due."  I can  only stand there and gape at him.

 He is the leaning tower of Pompous.  In the ordering process of dinner, the  waiter asked what he wanted to drink.  He said with an attitude, "I don't  know what I'm ordering to eat yet, so I can't possibly give you my wine
 selection."  And after the waiter left he gave us a lecture on which wines  go with what entrees, as if we care.  We love to get his goat so we ordered  cokes [which is what I enjoy and that is what I will drink - we don't do
 things for 'show' like him].  You should have seen his face.  He wanted to  change tables away from us as if we committed a mortal sin;  he then went on  and on about how there are rules for what you can drink with___this and  ___that.

 I couldn't resist myself.  I said after what I have been thru there are NO  rules anymore; only that we are happy and healthy.

 

8-31-02

  How I can relate to looking in the freezer as an effort.  I still have days like that.  It can take me a few days to get together a simple dish.  Or a pitcher of home-brewed iced tea.  I can start to do several chores and never finish any.

 

When you wrote about the people at the wedding that you hadn't seen in years and they wanted you to fill them in, I just sat here nodding my head.   That has been one of our realizations too.  There are so many people that have been with us from the beginning; they count.  The others have to go down a rung.  Especially since I can't talk much at a time, without it hurting.  So anyone who needs that much filling in......they aren't worth it as you said. One of the gifts you get A.C. is you know who your REAL friends are. You learn who not to waste time with.

 

Some days I feel better than others.  Some days I can eat a little more; others I actually eat less.   Most weeks now, I don't have to report to all the drs.  But last week wasn't one of them - it was a busy week.  I needed to get a letter to get out of jury duty.  All the reports and records are in a file box here in file folders and we don't always read them thoroughly as we file them.   Case in point.  When we had an opinion at Hahneman, the dr. we saw wrote a report to our surgeon.   We only just read it in more detail [I got called for THE THIRD TIME IN 4 MONTHS, FOR jury duty and needed the letter for an excuse].  That is another story - I got excused the other 2 times and am not ready to serve yet.

 

Anyway, one dr. at Hahneman wrote in May that my prognosis is poor.  How's that for shaking you down to your very fibers.  Meanwhile, he told a mutual friend of ours [Harold, s.'s cousin, the radiologist] that I am doing fine.  I'd hate to think I went thru all that hell to wind up in the same place as if I did nothing.  We take it all with a grain of salt.  There was a lot of input, we noticed, on the report, from his residents.  Again, many variables.

 

We went up to Temple last week and saw the surgeon.  He is really a fine dr.
He explains and shows us everything.  He put up the CT scans from before the
surgery which show my trachea pushed off to the side of my neck by the mass.
The trachea at that point was also a tiny slit. It would have closed off and
I would have strangled if the mass grew any more and I hadn't had it
removed, even if it were benign.  And then he put up the recent CT scan and
VOILA! My trachea is back in the middle again.  And it is a nice round
opening again.  That was the good news.  He liked the scan and we all pray
they all come back this way.

He said my tight feeling and swelling in the neck may be  there for ever
since the fluids are not draining normally.  The main problem is many
permanent diversions were made during the surgery to remove the jugular and
muscles and lymph nodes.  It will never improve... he doesn't want us to
have any false hope.  This is want they mean when they say you are never the
same as B.C.   He said I will  have to exercise the area forever to feel
only just some temporary relief  [and the exercise will actually make the
swelling worse but I need to do them to keep flexibility].

As for the guitar strumming in my toochas...... we also had the radiation
oncologist's visit this week.  It is a problem with radiating some of the
spinal cord and he has seen it in only 1 other case.  It has a name to the
syndrome [I forget the name, though].  We have to keep an eye on it. He
echoed the surgeon, especially the opinion that I must constantly do the
neck physical therapy or I will turn into a rigid-necked inflexible Barbie
doll.    He will reserve all other opinions till after the Pet scan.  And
the blood tests.

 

At least I am not losing weight anymore so he was happy with that.  His staff was glad my voice is back; some had never heard it before.

The only test he did this time was to see my vocal cords [but NOT with the
camera, again].  But he stuck a mirror way back and if he had done it on the
right side, I'd have handled it better.  But he did it on the left which
still has some burn damage and anything that touches there gags me.  But he
was quick.  I have to say   "EEEEEEE" instead of "ahhh." The "EEEEEE" is a
bad thing for your gag reflex when the dr. is pulling your tongue out of
your mouth.

 

9-1-02

We still have our company down but it has been very easy on me since they are in the house next door [we can have people rent it by the weekend if our neighbor isn't using it].  We see them for about an hour at a time off and on [depending how I feel and how she feels] and the rest of the time they go about their own activities.  And I rest.   For some reason this weekend I started getting dizzy spells [could be the one jugular side affects or my blood pressure].

 

For example, we saw them for breakfast this morning at a diner near here [the service was abominable] and then we went to our fitness center for my physical therapy exercises. I was wiped out all afternoon after that so I just rested around the house. Off and on I'd read the Sunday paper and do some wash.  Then at dinner, they came over to our patio and we ordered pizza.  Now everyone is in their respective quarters.

 

  We all talked out a lot of things and it has been very therapeutic for all 4 of us.  I am finding out that a lot of the feelings I have had are normal and she went through them too.  Even though I consider her as the most -together person I know, she was shaken [as would anyone be] to her very timbers by her metastases.  Her husband lost a lot of weight just in the last few weeks, from nerves and getting anorexic.  They seem now to be doing a little better since she is 'on a path' and actually started getting the medications.  It is when you are doing nothing, that it is at its worst. 

 

9-2-02

I've been reading some lately but it takes me weeks to finish a book - no ability to concentrate for long periods.   I did finish a Patricia Cornwell novel [forensic crime lab mysteries; she is great].  And I love Janet Evanovich [One for the Money, Two for the Dough ---series---have you read her? They are the best - I am reading #8 now - she does one a year].  We both like Brad Meltzer his mysteries are about lawyers.  And go fast, too.   I go back and forth between these books and some classics [I like Marcel Proust, Sylvia Plath...read Lolita, Heart of Darkness...].

 

9-3-02

I know how you feel about the hugging; at a time like this you really need them and could use them.  So instead, the drs. warn you about the contact. When I had that choking-wheezing spell the other morning, I realized I am not better yet and whatever slight thing caused it, we'll never figure out.  But it makes me even more cautious not to get an URI because then I'd have no airway.

 

The end of the summer is ok by me . It is far less crowded here now.  The traffic is better. It is quiet. And I enjoyed the chill in the air this morning.  Very refreshing - maybe a new beginning.  Goodriddancetotheheat.  We did go to the beach a little today.  Our friend Art called and said he would bring chairs and an umbrella for us [damn nice, of him, I'll say that - it is a lot of lugging - he knew our gear had to be lugged off by now]. He was going to sit at a beach near Lucy the elephant so all we had to do is walk there and it is about a mile round-trip.  We all sat with Rosalie, who lives right there - she is the one with ovarian cancer.  If it had been nice, I was hoping you'd meet her.  Another very together and brave lady.  Tuesday is her treatment day but she got a rest today.  Her hair is gone and she had on a wig...I think I told you we have been emailing for about 3-4 months.  I've known her for years. She has been in 2 Woody Allen movies and on a few soap operas.  Unfortunately we have a lot in common now. Her husband put up an umbrella next to Art's so we had a 'cabana' for the cancer patients. We'd sit there and remind each other to drink water.  We enjoyed sitting in this new location with people we could converse with rather than with the 'lemmings' I told you about.  We sat about an hour or so and walked back so I got my exercise in, too.  OF course then I was tres fatigueee. But it felt nice while it lasted.

 

9-4-02

Had 4 vials of blood taken today so now we wait to see what all the tests show; they are still working on pre-cert. the PET scan.  I spoke to the imaging center and they said it will be approved since I had already had one in March and established the reason.  It is only a matter of time till I get my appointment --- nothing better 'light' up [that would be very very bad]. 

 

9-5-02

Tuesday I will have the scary-ass PET scan. The surgeon and imaging place got it all pre-certified quickly because I had one before.  It is to start at 8:30 A.M. and we pray nothing 'lights' up.  That would be bad [it signifies cancer cells].  Somehow we have to figure a way to get the results fast before I go bonkers.

 

The surgeon and imaging place got it all pre-certified [it is $6000 and $600 for the
radioactive injection, if you don't have insurance] quickly because I had one before, they said.   With all that radiation, we don't see how anything could be left.    It is a new technology and a BIG one.  That is a nerve-wracking but telling test; it sees cancer on the cellular level so you pray it does NOT light up at all.

 

9-8-02

We actually welcomed the rainy weather.. . as an excuse to stay in and
hibernate.   I suppose we do the same things here when it rains, as we used
to do up in H.V.  When we had a condo in Margate, and only came a few days
every so often, I'd bring paperwork to do or correspondence. We actually
look forward to some in-the-house-time to do things like go food shopping,
balance the checkbook, file, catch up on the wash and cleaning, and just
keeping up with life.  But most of the time, though, these days, I just rest
my head on Alan's lap and doze for hours on end - been this way since April.
He is such a comfort when I am not feeling great. His patience is amazing.

 

9-9-02

Especially, this weekend,  I have been very nervous about tomorrow and wanted to have quiet around me.    I am so much closer to our house, for when I need something. We had forgotten what that was like.  That is such an important factor when you don't feel good.

 

 But after we get there, and rest and read some, we take a short walk sometimes when I can.   We have tried driving but it way too much stuff to pack and unpack and then I am still not near the house but we have the sand all over the car so that is not fun.  The Frieberg's [and a few other people we know from Ventnor and Linwood] do drive over to 34th to sit with us occasionally and I can't get over it that they do all that packing and unpacking.  The wellness factor must be the difference.  But it is about the only social activity I am up to for now, so it is good to see people for a while. 

 

We stayed here instead of going up there for the holidays - l kind of knew we would. We usually have dinner in Rydal at the home of our  friends.  I am still so wiped outmost of the time.    

 

9-10-02

Last  Wednesday, I had 4 vials of blood taken and I thought all we had to do
is wait to see what all the tests show.  I am so annoyed; the hospital lab
called me the next day and said there is an error and they need to take more
tubes of blood from me.    At first I got paranoid, thinking that they were
going to clone me. Then they explained the tests the drs. ordered need to
have the blood drawn and put on ice immediately or the substance they are
testing gets lost by decomposing. The phlebotomist erred. Didn't use the
ice.

I hate this - there is no excuse for such sloppiness.  My arm is so sore
from the first blood-letting...and black and blue.  And I need to preserve
my veins.  And that arm now has a blood clot too.  So when I returned to the
hospital on Friday I found the supervisor and reported this and made a
situation out of it.  Maybe it will save some other patient from going thru
this.

I was especially put out since I need that arm in good shape for Today for
the scary-ass P.E.T.  scan.

 

As far as gaining weight,  my latest lesson in life is not to be too thin
because you never know when you need a 'cushion.'  At least of 20 pounds.
That is what  I lost.   It is a good thing I didn't lose more and it is a
good thing that there was a cushion.  It may have saved my life. So I just
got off the phone with a friend and he and his wife are having a contest of
who can lose 25 pounds first;  you can guess what I told them.

 

In answer to your questions, I sleep badly at night.   There really are no
special pillows but sometimes I try to arrange 2 so I get comfort for a few
hours. It is necessary to keep waking up and moving the neck area or it gets
too seriously stiff.  That gets complicated by the radiation burn damage I
still have. Since my trachea and pharynx were burnt also, if the area gets
dry [and it does at night -  they call it tracheitis and pharnygitis], then
I cough - so that wakes me up and I have to drink water to get rid of the
sensation.

.

   I'D forgotten that it is a hard test to take - if you have a bad back
you'd have to have trouble.  After they inject you with the radioisotope,
you lay down STILL for 45 minutes and then they put you in the PET scanner.
There you are on your back, flatter, for another hour with your arms
strapped to the table.  When I got up, not only was I dizzy but my back is
very sore.  They place pillows underneath, but still......     And they said
they can't stop the test if you need them too [no coughing spells allowed,
nothing!]. They'd have to start over again. So you do a lot of meditating
and diverting your attention . That was the hardest part for me since the
trachea and pharynx were so burnt that if the area gets dry [and it does
especially at night and when I lay down -], then I cough - so that  I have
to drink water to get rid of the sensation. And then there's the rare
occasion where I wheeze but today I was lucky.

So after the test, to tell my blood vessels we have to get down to business,
I had a breakfast Mc Muffin [hahahaha].  Haven't had one in years; felt I
deserved it.  Unfortunately, yesterday I got my blood tests back ---and that
included the cholesterol .  It was very very bad - the worst ever.  It was
456.  The HDL's are 51 which are ok and the triglyceride was 195.  I can't
even think about it - I had to get thru today first.  I haven't been on my
diet in 7 months ---and I really slacked off, eating whole eggs, cream,
meat, cheeses, ice cream, butter.  I didn't think it would make that much of
a difference. After all, I lost 20 pounds and thought it was directly
proportional.

Thank you for emailing and being such a strong supporter.    We are
beginning to see how self-absorbed a lot of people are and how they are only
there as 'friends' when it is easy for them or convenient.

I need to 'divorce' some people.  I didn't tell you exactly what happened
Saturday.  My egocentrical ex-'friend' ______ has so much [rather her
husband has so much] but she doesn't give back in any way shape or form.
Either with her money or her time or her self. What she did Sunday really
got to me.  We walked over to their beach to see them [THEY WOULDN'T THINK
OF SITTING ON OUR BEACH ONCE, after all the years we have trekked up there
each and every day - WE HAVE TO GO THERE TO SEE THEM, EVEN BEING SO
DEBILITATED AS I HAVE BEEN] but she said she would walk us back.  So she
started with her fast walking and in no time was 2 blocks ahead of us; we
usually walk and chat.  Well, we had NO conversation.  This was the
clincher.  Her husband [who had  heart attacks can't keep up with her pace]
and he pops nitro during their walks.   I used to be able to keep up but for
once, I thought considering the change in circumstances, maybe she'd break
her stride [FOR JUST 5 MINUTES] to talk a bit - we haven't talked in 3
weeks.

 We are grateful to have made a new life here, with new friends. The 4 or 5 couples involved as described above are a small minority, thank goodness.


We learned not to take those other people seriously.  They are very very self-absorbed.  It was disappointing at first, realizing what they are like, but now we are used to it.  They all knew about Alan's  book signing and not one of them came over.  One person [who we thought were dear friends] called that morning and said to Alan "We'll be at the beach all day; we'll be there in spirit."  I would have said that we wouldn't need to do a book signing if everyone felt that way.  Thought you'd like that comment. She walks along the beach anyway, AND PASSES THE LIBRARY, so she could do a half block detour.

 

 If this were her, I'd never put the beach first - and she's the one who does not like the beach and looks for other activities to do like silly-ass mahjong.    She didn't call before the scan to wish me luck or after to see how it was [she refuses to email at all].   But I learned this summer that those are not true friends - they come down here and have a vacation mentality and they will abandon you in a flash, if you don't do THEIR activities.  It wasn't everyone. But the ones it was, surprised us.  They will all be in this position some day unfortunately. You don't get out of life without illness.  What goes around comes around.  It is so true.  So that is an era that is over with and now on to new friends and experiences.


Someday they will experience a very lonely time in their life because people
treat them in their time of need as they acted towards us.  I am really ok
with it; it is good to learn definitively who your friends are.  It was just
a disappointment as I put it all together.

You know how she does NOT cook one thing, ever.  If I had a husband that
worked all day, and I sat on my big fat  ass, then I'd feel obliged to get a
meal on the table, as doing my share.  Not her.  She never cooks or bakes.
Not breakfast, lunch or dinner.   He comes in from a hard day  and then makes dinner. 


Do you think the radiation affected my brain?  Or is the old Barbara
surfacing again? Whatever.

 

Oh, and a funny thing happened - we were on the beach for a while on Sunday
and Marcie was reading the ATLANTIC CITY PRESS.  She got to  the food
section and cracked up ------she started reading something I wrote that was
printed. There was a contest and I submitted a favorite restaurant with my
favorite dish, as per a contest they were having.  And it was printed.  It
was the waffles at my favorite ice cream parlor in Margate, Two Cents Plain.
When I was walking by tonight, the owner was so tickled about the free
publicity that she gave me 4 gift certificates. Just what I need.