December 29, 2002 to March 26, 2003

 

 

1-4-03

I started the last year at Atlantic Medical Imaging and I ended it there. And it didn't end much better than it began.  The PET scan that we waited 3 months for - though not definitive yet in all areas -  showed some disturbing results.  Monday was a disaster - I did the 24 hour prep for the test and had to be medicated to withstand the test [last weekend I developed shingles, pain and all, due to being immunosuppressed STILL, from the radiation therapy].   There was a snafu Monday - the PET scanner didn't work.  So as a gesture of apology, they re-certified it for Tues, and  for the broken instrument on Monday, the radiologist that reads the test , read it immediately and called Alan and  I in to see the pictures and explain that they meant.

The test was painful to take because of my new shingles infection - on my back - where I had to lay for an hour still. I can only guess what elderly people with bed sores must feel.  I was pretty drugged up though, and the tech was wonderful with many cushions and always re-appearing with the count down.

First, there is an area in a lymph gland under my left arm that lit up.  He said it is possible that at the number it lit up, a low number, that it could either be an inflammation or malignancy.  When it is a high number, it is only a malignancy.  We are, naturally, hoping it is an inflammation. But we are not deluding ourselves . It will be up to my drs. to decide how to tell one from the other. . . so...... who would think that the test is not sensitive enough.

Then he showed us 2 lit up spots on the lung.  Also low numbers.  Who knows what that is about [I don't even want to breathe a guess].  He is suggesting to my drs. that I get a Cat scan of the lungs next.  Lucille, my friend who is the lab manager at
Jeanes Hospital [only guessing to make me feel better but it didn't work] suggested maybe the shingles sores are being seen, but who knows.  We are beginning to hate PET scans. Do you know about this theory being possible.


And finally there is yet another lit up spot on the aorta near the esophagus [or the other way around - I stopped listening at that point since I was totally freaked out and neither of us remember now].  If it is inside the aorta maybe it is arteriosclerosis, seen as inflammation.  But it is too many hot spots now.  We wanted it to be totally clean.

The only good news was the spot that showed in Sept. was NOT there! Gone! And the questionable tissue from last month's CT scan [thin slice] that they said was soft tissue and maybe reoccurrence of the malignancy DID NOT light up. So then the radiation oncologist was right and it was scar tissue?????  SO my neck is possibly dandy. Nothing is fixed in concrete with this - EVER!   SO are these new signs inflammations or the start of something else.    We have no idea if any cells left the main mass - for example - months before I was diagnosed and then they planted themselves in these sites.  It is not clear and concise.

We came home and have been hibernating.  We did not want to go anywhere we were invited and put a damper on people trying to have a good time.  We just can't comprehend it all in such a short time and are trying to mull thru it.

 

We know that helps immeasurably.  You have become such a good friend to us.

 

It seems like when we were younger, we'd go to the dr. and get checked out and leave...no worries.  Now - even if someone hasn't had my experience - my friends tell us that they go to get their exam and worry that EVEN if it comes out good in that particular instance,  then sometime eventually, it won't come out fine.  It is only a matter of time.  Borrowed time that we are on. 

 

 We waited ALL day for the dr. to call and he didn't so I called his office.  They said there'd be no results till Monday so we went to get milk.  Wouldn't you know that he called while we were out, 5 minutes before we returned.  I called and he was gone......till Monday.  We can not understand his answering machine message - he has a bit of an accent plus the message seemed garbled.  What else is new. 

 

We think, on one hand, it would be wonderful if it is the shingles shoving their face in the pictures.  My numerous sensitivities did not seem to interfere with the other 2 PET scans, though.  But on the other hand, the drs. don't want to minimize anything and have to investigate it thoroughly.

 

We saw a neurologist today and he said it all depends on what vertebral line the soars from the shingles are on - my shingles are at T-6, I think he said. So if the PET scan spots match up with those at T-6, then just maybe, they are the inflammation.  It's just that I waver back and  forth - some of the 'stupids' we know that call to try to cheer me up are minimizing my situation.  You would not believe.  One person called to relay every detail about his cold ---another said I should go out and watch the squirrels [like maybe I'll shove one up their ass]. Another real idiot, said "..sorry to hear about your quirky problem."  Most people are not like that though.

 

1-4-03

Today we tried to take a ride to catch up on a bit of shopping I have lapsed out of - it hurts my back when the car jostles.  The shingle pain feels like a backache everywhere along the line of inflammation - so my ribs ache like a backache and it keeps waking me up at night.  There are actually MORE sores that started. And my rx is done now.  Anyway, we managed to pick up a vacuum part, go to the paper goods store, pick up a steak sandwich and a video to watch for tonight [I am bored of it already ---Tom Cruise in Minority Report].

 

1-6-03

And last but so not least, you two are amazing wonderful beautiful people.  That is just overwhelming about your villa offer as an auction item.   There are - as usual - no words in any language to describe you.  This is going to be some affair. WOW!  It is just terrific and a million thanks.

 

Today I took lysine and zinc to help ease the shingles; we read about it on some sites.  We put aloe on them [I have a bottle meant for internal consumption I used for my burnt esophagus] and a GALLON of CALAMINE lotion.
 

 We are doing our best and trying to stay in the moment - the here and now and stop "what iffing."   Easier said than done... we try to shut down the  fear for the moment.   Slam the door in our mind and stand back and see all I have done in the past year. I am alive.  Scared ...but alive.


 Today finally, I spoke to  the radiation oncologist - he called and is such a soothing guy.  We hope he can figure this all out.   He said  to see him in a week - he is having the PET scan mailed to him to look at himself.  He said since I have a severe inflammation, the PET scan could possibly interpret the site of shingles by picking up the glucose and radioactive tracer and light up.   He said that any inflammation will have a higher metabolic rate than the uninfected skin around it.  SO if it is highly metabolic it will uptake the radioactive glucose and it will glow.    Cancer cells uptake the glucose since they grow at a faster rate than normal cells.  But the test can not distinguish the inflamed cells from cancer cells.  $6000.00 and the test is not perfect. Keep everything crossed.

 

No crying or screaming - yet.  No energy for that.  Just numb.  The Rabbi called and said the same thing.  Feel free to scream and curse.  I don't have it in me now.  I bet I was angrier at the college and city.  This is just overwhelming.I know it is all for some bigger purpose [ it was meant to be - each aggravation we had in life led to something else where we used it as an education].  This could be the foundation or something I don't even know about yet.  God has plans for me. I just have to take the nod.  Thanks for the reiki site ---guess this thinking falls under that.

 

1-7-03

there’s no stopping, --2 people determined to win a war.  That's us.

 

1-10-03

The ups and down days…this was an up day. The other day Alan had to go to Phila. for a chamber of commerce business meeting.  Neil Stein, the restaurateur, was there.  He owns some major restaurants.  It was at the Bellevue in the state drawing room, and the lunch was flawless [and free!!!!!!].  It was a scrumptious salad [with walnuts, my favorite] and great bread.  Then there was a chicken dish, pasta and vegetables.  But the coup d'etat was this chocolate cake with a mousse layer on top [with nuts and caramel].

We spoke to Neil Stein afterwards [he is a sincerely nice guy - who never
forgot his roots, his father was a huckster - I didn't expect it but thought
he'd be another G. Perrier.]  We told him briefly about my year and our
foundation.  He gave us his email address and then offered us a gift
certificate to each of his FOUR restaurants, to auction off when we have the
big fundraising luncheon.  We were incredibly touched - he never met us
before. So it is shaping up; soon we need to lock in a date and where.

 

When I was at the gynecologist the other day, he said he wants to gift us a gift certificate for our luncheon - auction for one in vitro fertilization procedure [we were told the value is between $7000.00 and 12000.00 ].  We are in shock at this point. We will put it in a basket with baby stuffed animals.  If someone bid the max on it  can you imagine how our Foundation would be well funded for a while just from that item.  We aren't even soliciting yet and people have been so incredible.

 

1-12-03

 

Thanks for the compliment about being a fighter.  It is ironic you wrote that but I always said I would not go thru what I went thru this past year after seeing my mother suffer thru the radiation treatments in 1972. And she died anyway. But when you look into the eyes of the people that love you, you develop a resiliency that you never knew you had.  Many times I likened the experience to being on one of those moving sidewalks ---the drs., for example, say "hold out your arm for blood to be taken" so you do it...you keep on moving along; the next medical type says "lay down on this table:" so you mindlessly comply.  And on it goes - like a puppet.  It is a mental lifesaver to divorce oneself from what is happening like that.  It is surreal in a sense. And then you hope to return to some sense of normalcy.

 

1-14-03

Well, people said to keep busy and distract ourselves.  Today we sure did.

 

1-17-03

We are busy this week with our Foundation work, planning the first fund
raiser for July 12th.  It will be at the Somers Point Fitness center,  and
the owner is donating the gym to us.   The support at this early stage is
unbelievable.  Four personal trainers volunteered their time to teach the
sessions. 
  The owner of the gym is donating the room.   And we are trying to write letters to get water or power bars
donated.

 

1-19-03

We saw the radiation oncologist the other day and he doesn't want me to have any  more scans for 3 months.  The imaging place will be getting a new PET and  CAT scanner in ONE machine, even more state of the art. Only Fox Chase and Hopkins has one. That should be more precise.  He examined me  well [as did a host of drs. in the last 2 weeks] and feels we have to give  the shingles time to subside.  They are painful and burn at times but he  doesn't want anything put on them.  It is a tricky sore.  He said the shingles DO NOT line up with the spots on the scan ---those are on the right side and the shingles are on the left.  Just my luck. And for the  next year and a half my neck scar tissue can get worse so it is imperative  to do the physical therapy a few times a day.  Now he tells me!

Life here sure is a roller coaster and it really tests the resiliency of the human spirit at times. For some odd reason I do remember the story of Mitchel's shingles.   I have stopped taking the pain pills for them but they still hurt and burn at times. 

 

1-20-03

here is something my Merion pal Miriam always sends me.

 

---the Latin -   

 

            Non Illegitimi Carborundum

 

It means "Don't let the bastards grind you down." 

 

1-24-03

Right now we are pretty aggravated.  We were there today at Hahneman and saw Dr. Brady, the radiation oncologist we have been conferring with  the whole time.  And we  got a 3rd opinion  at Jefferson with Dr. Keane [ an ENT oncologic surgeon, Dr. Kelley's counterpart - he was my surgeon who moved on me]. It was a little upsetting - Dr. Brady concurs with my dr. here.  That part is good.

 

 But, Dr. Keane thinks the PET scan warrants seeing a thoracic surgeon. The lung spots are out of the head-neck area, so he doesn't know what to make of them so he suggested it is time to see the 'next dr. down' the body, so's to speak. We are thinking about all this but not doing anything at the moment.  He was losing me in talking about laser surgery of this and vaporizing that.  It was too much too soon. And I am so not ready for any more. 

 

 His practice was too much like a factory and not at all on a friendly/helpful level.   There were a lot of problems with the assistants and we were left standing at the desk a long time at the end, and finally walked out.  I'll tell you more about that another time. I am tired of hearing about the 'big city' drs. being better.  Here is one case when they suck...he admitted he had never seen a case like mine or even close [the thymomas].

 

Dr. keane also took me by total surprise and did a fiber optic scoping AGAIN UP MY NOSE AND DOWN MY THROAT, like I had a few weeks ago in Vineland.  I was fit to be tied - I did not want it - I said to look at the letter from the other dr. to see the results.  He wanted his own look on it.  Now I have pain in my nose.  Terrible. Terrible.

 

It was a damn unnecessary scoping. When he started to do it; I protested.  He was bent on seeing for himself.  What also galls me is I called ahead of time and got NOWHERE and then I emailed ahead of time to ask if my case was in his realm of expertise.  I got no answer so I called and the nurse said SHE HAD ASKED HIM AND HE SAID IT WAS.  So then today HE SAID that the lung spots are out of the head-neck area.  Does this sound like he just wants more money.   I HAVE HAD ENOUGH OF DRS. TO LAST A LIFETIME.

 

Alan took me to the Ritz Carlton's Paris Grill for lunch.  For a while I couldn't eat due to the anesthetic - your gag reflex is numbed too so you have to be careful not to eat or drink or you can choke to death.  After a while and listening to Edith Piaf, I started to calm down.  It gives me chills up my spine to tell it AGAIN.


I am just keeping tres busy with my projects so I don't have to think

 

1-26-03

And thank you for your good wishes.  I need each and every one I can get. I have read that the more people rooting for you, the better your chances are.  Having an orphan disease means that information has been harder to find  and treatment protocols are not solidly established.   With the funds we get from our upcoming fundraisers, we strive to change some of that.

 

1-27-03

Alan is having the colonoscopy tomorrow morning.  All today - no food, only clear liquids or light colored Jell-O or water ice . And terrible tasting doses phosphosoda.  The poor dear.  This is what you have to look forward to when you are over 50.  We have put this test off for sooo long. Please say a prayer that he'll be fine afterwards. 

 

 Then today, was the test.  Alan is home now and feeling much better.  He said once they put the needle in his arm, he doesn't remember a thing.  They were waking him up!  Nerves play the biggest factor; worry that they will do something wrong.  That is really the crux of the fear.   It doesn't help that you sign a half dozen sheets first ---one of which says, "......this is not an exact science."  It is enough to propel you out of the chair and out the door, much in the same way their phosophosoda works.

I was a bit ticked off because the dr. told me and the receptionist told me   that I could go in to the recovery room and sit with Alan afterwards and be there when the dr. gives him the results - so I looked up at a little after
9:00 and Alan was walking out the door.  He was groggy and the dr. talked to him without me, just what I wanted to avoid.  It is bad enough when you are awake to try to get what they say.   But as long as he is ok.  Alan had a written report with COLOR photos of the interior with him, like a kid with a note from the teacher.  Seems like all is ok, for as much as they could see.  The dr. said the prep wasn't good [in other words, it worked better after
the test, than before it]. But for what they could see, they didn't find anything but they took a biopsy anyway.

 

 For as much as the drs. could see, Uncle's test was clear.  The dr. said if anything big was growing they would have seen it but if it was small, it may have been blocked from his sight because the intestines weren't perfectly cleaned out. 

 

We opted for very high fat food today.  Maybe fasting for a day and a half makes you crave the greasy life.  I ate the same as Uncle on Sunday ---or rather, I didn't eat.  A sympathy fast. We had a buy one-get one coupon from the local entertainment book at a place in Pleasantville called Wash 's.  We had never heard of it and went over.  Oh, mon dieu.  We were the ONLY customers - we called ahead and took it out and took it home.  But it had to be the best fried chicken I ever done et.  We have tons left over.  Alan even got some ribs. 

 

2-3-03

After months of getting an electronic tour of the health department, I
FINALLY reached the correct person [in
Trenton ].  She told me how to go
about taking a survey here in town and that they would welcome our results.
And she put my mind at ease - to start, we don't have to do the whole town.  We can
pick as many streets as we want, as a representative sample.  They will determine if there is a cancer cluster and then conduct the detailed survey.

 

Well here we are in the middle of the cancer incidence survey and we have heard of so many people that have just been diagnosed with it or unfortunately have died, like a few weeks ago, a lovely young lady [in her 40's maybe] that lives here in Longport died of breast cancer .  Just awful.

 

 Some streets, like ours, have a cancer incidence in EVERY OTHER HOUSE, on both sides of the street.  Another lady I spoke to said her street has an incidence in every house, for 2 blocks.  Everyone you speak to can list a dozen houses around them where people have been stricken.

 

2-5-03

Everyone says to keep busy until the next scan. Well, here I go again.  You'll love this - ANOTHER project.  I am running for the school board position here.  Can you believe it?  There are 3 seats in Longport. Right now I am just getting the petition signed.  Is there a hole in my head or what?  They were advertising it in the paper and I called the President of the school board for the candidate's packet.  She brought it over and explained it.  Then she told me about this other guy and I am opposing him - - - he has held his for 18 years.  [I met him last summer and he is very nice].  She said not to be concerned.  Alan made me a little flyer to hand out as I meet people; we also copied an old article from the Bulletin that described my med tech course at Frankford in the 1970's.  That's the extent of my 'campaign.'  I don't take losing well so we'll see what happens.

 

 My petition is now filled in and I have to get it notarized. The county clerk at City Hall will do that for free [she likes Alan's comments on the zoning board meetings].  It is more fun talking to the people signing it, than anything else.  One of my former students [Sharon] from Frankford in 1976 signed it.  She works at Premier Real Estate office here  [her ex husband's family owns it] and today I went in for her to sign.  She had all her office colleagues]  help by signing the petition, too.  They are all such lovely people.  They had all read Alan's commentaries and his head was getting so big from all their positive comments. 

 

You are right about some people never being happy; Stan wouldn't be whining if he had to worry about his health first.  That would pre-occupy his time.  Where you geographically are takes a back seat and in the long run doesn't matter at all.   Just being counts. Some people aren't like you and Alan [and us] - they can't entertain themselves or be happy anywhere.  Sad...their whole life passes them by.

 

Alan is incredible at filling in grants to all the casinos to see about them underwriting our 2nd fundraiser, in a year.  Meanwhile, I was at the fitness center tonight for my physical therapy and one of the trainers just walked over, gave us his card, and said he'd donate a personal training session to the cause [to auction off or use as a door prize].  Three of the trainers have done this so far.  Morey's Pier donated an item.  I have to make a list at this point.

 

2-6-03

 For the causes that the Foundation is trying to take on, Alan wrote to a few clothing manufacturers.  One of our goals is to have produced very soft and very comfortable tops for wearing during and after the radiation burns.  That was my biggest problem and still is.  I have a shelf of turtlenecks I can not wear; and even sweatshirts dig into the surgery and radiation area.  Forget anything with a collar.

 

His buddy emailed me, "IT REMINDS ME OF THE REASON W.C. FIELDS REFUSED TO  DRINK WATER---  FISH FORNICATE IN IT !!! "

 

2-10-03

I needed that.  Thanks for reminding me; I keep thinking I am 'normal,' whatever that is.  I suppose I am blocking out a year of my life.  You are probably right; I shouldn't go near kids because the dr. said the shingles could be contagious to them also.

 

You know I am with you  -  housework to me is like Zen.  When I get upset or get bad news, usually the first thing I do is grab a sponge.

 

To compile results for the incidence of cancer study I am doing here, I have a 'tutor' in Marin County, CA. who is doing this out there [one step ahead of us].  She found articles that brought up about places with water around them having higher incidences.   Some old-timers in the Ventnor and Margate community have some different ideas on this.  One man [an officer from the war] said that there was a great deal of dumping [maybe canisters of toxins] during World War 11 by foreign, enemy ships, as close as they could get to the NJ shorelines.  Of course, the beaches have been recreation for all of us for decades.  It is hard not to take a walk, even ankle length, in the ocean in the summer.  It is just too refreshing.  But who knows at what cost. Anyway, he told me that the canisters have not been recovered and most would be leaking by now.

This is all very frightening.  It will take several generations of oral accounts plus the scientists to get us some answers.  In CA., she wrote me that 'they' poked holes in the canisters [??????go figure].

 

 You are right about diets.  Some reason is applied so you can splurge on the goodies.  But not too much reason, as I learned.  If it isn't Saddam it will be something.   AN extra 10 or 20 pounds won't make a difference - YIIIKES - to the undertaker, and it is a cushion everyone needs. Sooner or later everyone gets ill and needs to ration, as we found out.The stores of fat are then so important.

 

2-12-03

The builder  who put in our patio, John Regina, has remained in contact with us especially thru this past year; he was very concerned and offered prayers often.  Today he called.  His brother is where I was at one year ago - he is 56 and needs a neck dissection to remove a large cancerous growth.  We talked and gave him as much information as we could to help him help his brother.  He said his brother was the healthy one in the family and very careful with what he ate and drank and exercised. It seems like a freaking epidemic.

 

Today I had - finally - the follow up ultrasound from the lump in my breast from October.  I have been putting it off indefinitely.  And it was fine, they said. Some good results. YEAH!  The imaging center is warming up to me [their best customer]; the dr. came in and gave us the results. So I wouldn't have to wait and be tortured.  Alan made a pitch that they should donate some to our Foundation and we left them  our literature.
We chatted civilly awhile, for example, the radiologist said we didn't need to send the formal letter with our request since they all know me so well there now. It is good not to be anonymous when health care is concerned.  

 

2-15-03

Today for some unknown reason, the shingle pain was very prominent. My skin burned and hurt and my back and shoulder hurt.  Almost like it was the day before I broke out in the rash the first time.  So I am hoping tomorrow or the next day is not a repeat.  The sores are still there, not getting any lighter, but until now, they haven't gotten  worse.  Next week is my appointment with the dermatologist and I hope I don't need him sooner.  When days like this happen it is a sudden lurch that brings me back to reality.

 

2-16-03

We saw Emily on Friday night and she has  so many contacts, my head was swimming. Some are with the casinos and she is going to try to help us get a sponsor for the luncheon.  We are looking at April 18, 2004.  We are going to a fundraiser with them in 2 weeks where she will introduce us to some of the people in the community.

 

2-18-03

 

Joel Kauffman wrote me that he found that high cholesterol levels are part of the body's defenses  against a number of common ailments.   He said, "Your high levels are what I now  see as the long-term defense against thymic cancer.  Yet another reason  why those levels should not be brought down."  What do you think?

 

2-19-03

 

Just trying to keep busy, for self-preservation, as you well know.  Through another 'tour' of many facilities, I got in touch with the tumor registry at Shore Memorial Hospital and they, after a long wait, gave me some numbers for total cancer incidence in Longport. They needed to keep going up the hierarchy to get 'permission' to divulge the numbers.  I felt like it would have been too much pushing - at the present - to ask for a print out according to each type of cancer [but I can get that later or even have the people in Trenton get it].  Now that they are involved, so much more data can be extracted from recalcitrant sources.  Ironically, did you see KWY's news blurb last night on the high rate of cancer in PA. and N.J. 

 

2-20-03

 

Thanks, yes - my nose is almost done bleeding now.  It is just a few spots a day so that is good.  Well, I took your advice and spoke to the thoracic surgeon's office.   It is a good thing I checked out a few things.  The main thing is that if I went for an office visit, it would have been a waste.  The nurse told me they need a CAT scan of the chest to know anything.  All I had was the PETscan but I have a script for a PET/CAT scan at the end of March.  The imaging center is getting a new instrument that does both at one time. So we are waiting for that to be calibrated. So then if the results are still the same I will go back to Jeff.

 

Thanks - after a few minutes of exercising the dizziness started to pass.  I know it is this one medication I take and I figured I could do one of 2 things.  One would be pass out or the 2nd was to exercise and speed it thru my system and get the side affects over with quickly.  So by the middle of class I was almost normal [whatever that is for me].

 

Thanks for putting me in touch with her.  She is just the type of dr.  I like.  She told it as it is.  We were surprised to hear that there can be long term effects on the blood vessels from the radiation therapy treatments.  Like blocked arteries, etc.  She assured me it won't happen this week or even this year.  It was impressive that she trained at the Cleveland Clinic - that is world famous so she brings with her a lot of good experience to your practice.

 

We won't be home, unfortunately, all day tomorrow since we have drs. appointments all day tomorrow - first an echocardiogram in Cape May Court House at Burdette Tomlin Hospital, then the dermatologist to look at my shingles and then we have to go up to Somers Point where Alan has his post -colonoscopy visit and we get the biopsy results.  I really don't like days like that because they tire me fast and for a few days after I have to rest.

 

2-22-03

And thanks for passing on the IGive site to Sarah. She used it and $5.00 was donated to the Foundation for the first time she shopped.  It is starting to catch on and we appreciate your help.  We use it on the average of once a week.  Every little bit adds up.  

 

It pays to know the people in your community and store owners.  Last night we took my RX to CVS for the anti-viral to get filled and the pharmacist said it would be 45 minutes.  I said we didn't want to wait because the roads were getting slicker by the minute.  I said the dr. wanted me to start it right away so she gave me 4 immediately [no charge - just would be subtracted from my total]!  And today we picked up the rest.

 

2-24-03

From there we went to Boscovs.  We had an appointment with their administration to tell them about the Foundation and they offered us a lot of help.  They can't write us a check directly but they can do things like print us flyers and advertise our events for free.  They said they could host a fashion show to raise money for the Foundation and all we'd have to do is sell the tickets.  They'd get local TV personalities to model. There IS a Mr. Boscov and he seems very generous.   They will donate door prizes and auction items [like fine china], let us use their auditorium free for any meetings we want, and they will invite us to participate in  events that could raise money for the foundation.  It seemed too good to be true.

 

2-25-03

 I forgot to tell you that yesterday I spoke to the dr. and she said my echocardiogram showed my heart is in good shape. Imagine that!  Globulets of high cholesterol fat cascading in my body [according to the so-called experts who write the table of 'normal' values] and my heart is the better part of me.   She did say there's slight mitral valve prolapse which we knew.  And she was thorough in answering a  few other questions I had.

 

2-27-03

Are you interested in working with the Ventnor, Margate, and Longport police on the domestic violence counseling team, by any chance?  I think I told you I signed up for it and the Margate police called me today and they need to recruit 5 more people.   If you want more information on it, I can tell you what I know, which isn't a whole lot right now but it is a good cause.  They will be setting up a safe shelter in Margate for the victims.

 

The anti-viral stops the spread of the virus but doesn't do anything for the pain.  What the dr. was suggesting I do is to up my dose of neurontin - that is the medicine I take to keep my trigeminal neuralgia pain in my right cheek to a dull roar.  He said they just learned it is supposed to help shingles pain.  He said if it doesn't, he can prescribe heavy duty stuff for me [but I will decline that  unless it gets too bad].

 

The Foundation website has had over 1000 visits!  One man has a dr. who said his cancer can't be thymic due to the type of cell that came back in the biopsy.  The dr. is wrong as my later biopsies after the operation showed.  Many drs. have no clue as to this type of cancer and they even confuse it with THYROID.  So Alan was able to direct this poor man.

 

And in the last week we were able to talk to 2 people that were diagnosed with neck cancer [exactly where I was a year ago-how eerie is that].   The 2 people are related to people we know who have brothers with the neck malignancies.  It is frightening how common it is.  We referred them to the website for some help.

 

 We are starting to get great donations coming in for our aerobic-thon.  The letters we wrote a month ago are being acted on.  Some high speed jump ropes were donated, some of those tube stretch bands, and today we received 2 all-day passes to Morey's pier in Wildwood. These will be door prizes or go to the person who gets the most sponsorships.  One clothing manufacturer told us to go to his internet site and pick out an outfit that he'll send to us to give as a prize for the person who gets the most sponsorships.  It is worth over $250.00!!!!!!   It is challenging planning 2 events at the same time.  I can see why Foundations need secretarial help

 

We realized yesterday that July 23rd is our 40th anniversary of our first date.  What a way to celebrate.

 

Friday I went to the dermatologist -  he looked at my shingles.  He unfortunately saw new spots and put be back on the anti-viral.  He said the shingles NEVER return to an adult if they have them ------EXCEPT in people that are immunosuppressed.  Drum roll...please. See how one thing leads to another.  The radiation therapy really did a number on my body.

 

Then we went over to get me an echocardiogram my new cardiologist ordered [hadn't seen one since we lived in PA.] . She is just the type of dr.  I like.  She told it as it is.  She did not  give a 2nd thought to my cholesterol ringing in at 380 since I have more important issues.    Like blocked arteries from radiation, etc.  More like 10 years.  She wants me to wear a heart monitor for a day because my pulse has been over 100 too much since the jugular made its exit . I'll schedule that in a while.

 

 We had never been to that hospital but my radiation oncologists are there [right around the corner] so we stopped to say hello and show him the decorated mask.  He hugged me when he saw it and the Foundation brochure. 

 

Small world...the tech who did the test works for    the primary, one day a week.

 

 In the afternoon we had to go up to Somers Point where Alan had his post -colonoscopy visit and we were to get the biopsy results.  We sat and sat for over an hour and were nowhere.  We asked the receptionist what the dilly-oh was and she said we wouldn't get back to an examining room for yet another 45 minutes.  Alan said we have to leave; we were both furious.  The blue cross handbook said waiting beyond 30 minutes is unreasonable.  All this to pick up a paper for his report.  We asked for a copy of the biopsy report and the check for our deductible back; they sure are careful to collect it in ADVANCE.  The girl was taken aback.  We got it though, plus the report but they were quite flustered that someone did this.

 

P.S.  The dr. redeemed himself.  About 6:00 he called Alan to talk to him [I was debating telling the girl to tell him to call - like a final exam -  but I didn't].  He read my mind.  Alan was ready to write a column on the experience.  These recent insurance changes are creating havoc.

 

  3-2-02

We just got home from a benefit auction.  Our friend was on the committee and said it is always a
good affair.  So what did we bid on - none of the dinners, or beauty-salon
packages, wide screen TV's, Seinfeld or Bon Jovi show tickets...not the
'fun' stuff.  They were auctioning off a new state-of-the-art CTA [coronary
artery] scan that is done in only 3 places around the country and costs
$1500.00.  It is supposed to show the levels of calcification, any
blockages, etc.  Insurance does not cover it at all; I have tried over and
over with scripts written from my drs.but they do not cover the test.  So
silly - since it could save them tons of money in the preventative factor
alone.  The drs. that own Atlantic imaging center put the item up for bid
and as we usually do, I wait until the auctioneer is closing it out and then
jump up.  So we got it for $450.00.  A real bargain.  The owners of the
center were there and I bet I can get the item for our own auction when it
is time next year.

 

Thanks for the compliments on the website.  Running a Foundation is really a
full time job.  Planning 2 events is overwhelming.  It has snowballed.
People have heard about the aerobic-thon and want to host one for us so we
are doing July 12th and 5 more after that [not scheduled yet].   The
luncheon is also tough work.  We need a place.  The casinos haven't been
cooperative yet.

 

3-3-03

The writer from Ocean City is writing nonfiction.  The book is about - GET THIS! - preventing cancer.  He is not a dr. or any type of medical professional.  It is all self-taught hence his difficulty in finding a publisher. He is having it printed in France.  He believes that if you take certain over the counter enzymes you won't get cancer.  One is pancreatic enzymes [I think he said amylase and one other]; the other is B-17, a derivative of laetrile.  Yikes.  We didn't know what to believe as we listened to him.   He typed it by hand because he said he can't use a computer; surgery on the right hand.  I said all you need is one finger on the other hand to poke and peck.  So he said that narcotics messed up his mind [pain pills for his hand surgery].  He works at Boscovs by day and wants to write full time.  He wants to meet again really soon.

 

Like you, my exercise schedule comes first, especially since the surgery and radiation.  The drs. all say I must do it - physical therapy is to keep my neck from getting so stiff that it wouldn't turn.  They removed a big muscle from it with the tumor.  Then because my jugular was removed with the tumor, they want me to start adding some aerobics because it would be nice if a new vessel took over.  And because my cholesterol is so high and I can't take the statins, exercise is my best medicine they say.  It is hard because I get very tired but I do it.

 

3-4-03

When we came home, Alan played the answering machine and there was a long message from Vincent Irizarry, Dr. David Hayward on All My Children. My ears could not believe it.  Everyone thinks their agents would call. Such a wonderful guy. He would be the star event at our celebrity luncheon. He has been on other soaps and Beverly Hills 90120.  We are still working on which casino will give us the best deal.

 

The drs. don't think stress causes the shingles much anymore - it is the virus hibernating in you since chicken pox as a kid, and due to the way the radiation knocked me for a loop, it took over.  I do some yoga and meditation.  Some Pilates.

 

 BIG EGO!  Now I have the residual bleeding and pain in my nose.  Terrible.
 Terrible. I bet he does it for the insurance money.  You know, in his
 waiting room, most of his surgical patients had those voice simulators; in
 Kelley's, we never saw ONE.  Same type of dr., same cases -  Kelley warned
 me I may need it but he was skilled enough to avoid it.

2-9-03

 All night and today, I was fighting dizzy spells ---it seems like since they took my jugular out, my pulse is off the charts and today it was 102.  It is almost a year and of course when I am in the drs.' office it is normal so they haven't given me anything for it yet. 

 

3-5-03

You are right - I am sick of the scans and tests but you are right twice.  What can I do.  Life will never be as it was b.c.   Funny how when I was told a year ago, I wasn't phased by the fact that I could die  really soon [like from the surgery].  But now, as long as I can feel sort of ok, I want to have more days. . . to walk on the boardwalk, to have a celebrity auction, etc.  So the scans are a means to this.  Believe me, I don't know how I'd react if I needed more than a non-invasive scan now and then. It is all relative.  They have become the norm now to me. Any more therapy or surgery is something I don't think I could deal with.

 

3-6-03

My coronary scan will be March 24th; they are very booked up at AMI, already.  And probably 6 weeks after that will be my PET / CAT scan.  The instrument is taking some time to build into the room, they said. Back on the road to seeing drs. again. Friday I have to see the primary [it has been months].  There is a swelling on my right calf and the dermatologists felt it may be a fat deposit or something like that but who knows.  Wish me luck.

 

Next week I go to the cardiologist to get that heart monitor for a day.  Have to keep a diary so they can interpret the readings.

 

We are dizzy.  So much is happening...each day.  Alan got a designer from the Style channel to volunteer to decorate a shirt that a cancer radiation patient could wear comfortably.  He'll sign it and we can auction it off.  Is that too amazing.  He has a website and his clothes have been in Elle etc.  I think his name is Sully Bonnelly.  This auction will really shape up. Today 100 free tubes of toothpaste came that we can put in the gift bags of each attendee. And some great exercise kits - a Pilates one, a yoga set, and a big ball.  This is really getting to be fun.

 

We had to go to city hall this morning because the county clerk was picking the ballot position.  The probability is good if you are the first name on the ballot [people get lazy and just push that tab in].  I was hoping for number one, but they told me I was number 2.  The school board president made two  labels and put them in a wallet and SHE picked.  Before I had a chance to say "Let the bit Mayor pick" - it was over. 

 

Tonight was kickboxing and I did almost the entire class.  Then we went out for pizza with the instructor.  So much for shaping up.  I did order part skim cheese ..

 

 Yes, there was a long period where I couldn't do kickboxing at all and then only 5 minutes.   It is an emotional time now since it is exactly a year when we had that cervical scare with Dr. WU, the operation was almost called off, and then we were saved by the Temple dr. who examined me and said nothing was wrong.  The CAT scan mistook benign nabothian cysts for a huge mass. It was a nightmare. 

 

3-7-03

Today I saw Dr. A. about this lump we discovered on my right calf. Did I show you?  TO be on the safe side, I will have an MRI of the area on Wednesday.  He said it feels good and he hopes it is just a lipoma [I hate words that end in 'oma' anymore.]   But that would be good ---just a fat body. 

 

 He listened to my lungs a long time and they were good so my cough could be from my burnt esophagus, trachea, and pharynx...... STILL!  Or complicated with a post-nasal drip.  He was concerned how hoarse I am but glad I will get the CTA scan.  He said it is much better than the EBT at U. of P.  He just came back to work after a hip replacement. He looks good, is moving well, and did you know he is  53.  We thought he was much younger.   He lives in Longport and will vote for me.  And his parents are disabled, so being the PHila. politician transplanted here, I took two absentee ballots to him for them.  This is so much fun. 

  

Nicole cut my hair tonight and I let her have her way with it and 'fix' the color.  Never had it colored before.  She and Alan think it made me look 10 years younger; I was very nervous because of the fear that the harsh chemicals would be bad for my hair, which is the weakest it had ever been.  It only just stopped falling out in big amounts and started growing again. SO we'll see what the next few weeks bring. 

 

3-9-03

It is not the party ending that worries me, it is the suffering till they turn off the lights.  My father went so quickly;  a few hours and that was it.

 

You are right about the cough, most likely.  If it is benign and just a trauma left from the searing radiation, I can handle it [but in the back of my mind are those 2 lung spots from the last PET scan and Keane recommending a thoracic surgeon].

 

3-10-03

I am sorry to hear your brother will have to lose perfectly good teeth.  He sounds very brave.  It is probably harder for the family to watch than the patient who has to bear it. Mainly because the patient can be out of it due to all the medications.

 

After the surgery, it was extremely difficult for me to swallow without choking [the entire neck was swollen, parts were re-aligned due to the removal of the jugular and the area was sensitive from the 9 hours of anesthesia]. I could only drink with a straw and had to hold my head in a certain way or I'd choke, to the point of not being able to breathe.

 

This abated very slowly and the radiation started before it ceased altogether.  That is what made the radiation so difficult for me.  They put a mask on my head and bolted that to the table for each treatment.  My neck was tilted back in a horrible position so the cough sensation would start.  And I couldn't swallow in that position.  Try laying on your back, on the bed, FLAT, hang you head off of it, lower than your chest  AND TRY TO SWALLOW. TRY NOT TO SWALLOW FOR 5 MINUTES OR SO. 

 

 The radiation was much worse than I anticipated.    The mask they made was intensely tight on my face.  It wasn't that way when they tried it on during the simulation [that is when they tattoo you].    I had several panic attacks, at the beginning [never had them before in my life].  It was pushing my nose flat, it was so tight; it was pulling my eyes to the side of my head and pushing my contact lenses into my eyes and it pushed my lips closed so I couldn't talk or call for help.  I didn't know how I'd endure it.  The worse pain was it pushed my cheek where I have the trigeminal neuralgia. And then they screw it down into the table and there is absolutely no leeway.

The dr. said to have the technician cut out some of the mouth, for release;  or it will have to be made over.  The problem is that the skin was so sore still from the surgery.   But the social worker was a huge help, being a liaison between all the staff.

The funniest thing happened; she handed us her card and when I saw her last name, I asked if she was related to a dean  I had when I went for my education degree at Temple Univ. in the late 60's.  Turns out it is her father and he lives in Linwood now.  He was instrumental with me going into teaching and back for my master's degree;
and we had kept in touch while I was in the school system.  What a small world.

 

I kept thinking that this was a good omen - all during the treatment – and it went a little faster for me.  Not easier, but less of a panic. .  I am not usually like that.  The initial biopsies, tests, and surgery with its blood clot and hemorrhage were easier to take than the radiation treatment. 

 

Tell your brother to use imagery. My friend [an artist], said to envision the cancer cells as criminals ---very stupid, inept criminals, and that the radiation will kill them. You know, like those stupid criminals that Jay Leno reads about.

 

3-12-03

Alan found an article about drug enforcement agents in Northern CA., that say the fumes from methamphetamine during their drug busts have caused them health problems, like cancer.  It named a few agents and their types of cancers.  One man had thymoma [similar to what I had and also it is rare].  After one month of searching, I found his email and phone number and called [left a message].  He called me back and we had a long chat today. Any case similar to mine could be a help.

 

The reason I am so interested is because when I worked in the labs in the 60's and taught the rest of the years, I ALWAYS came in contact with carcinogenic compounds but at that time, they didn't know the extent of the damage they could do.  I breathed benzene rings routinely.  I sloshed formaldehyde on my skin.  As I read about the agents, I thought that maybe we could share information and find out more about lab chemicals causing cancer.

 

Mike, the agent, was so nice.  He had his surgery 6 years ago [his cancer was attached to his lung and he needed a heart surgeon handy].  He said they can't wear masks or respirators because they are carrying long guns [it is just like a movie] and it would interfere with their aim.  He was telling me how the fumes can be even more toxic depending what the baddies cut the drugs with. 

 

Tomorrow I get the heart monitor is to see how my pulse [heart rate] is doing.  The dr. said if it is high ALL the time then that is not good.  If the 24 hours shows that it is high some time and low others, that is better for me, health-wise.  It is a big strain on the heart and the rest of the circulatory system if the heart beats over 100 times a minute.  Since my jugular was removed, my pulse has raced.  The body tries to compensate but it is difficult till some new vessels can be generated, if they do generate.

 

The other news of the day is RESORTS CASINO came through for us.  We are having the luncheon there on Sunday April 18, 2004. As long as the USA still exists in a year, right? Write it on your calendar and maybe you can come with Alan and even Jodi [and your daughter-in-law and Carl].  We will need help selling tickets.

 

3-13-03

 

Here I am sitting at the computer and very uncomfortable.  I have the HOlter heart monitor hooked up - since 4:00 this afternoon.  The lady who put it on me started to take like an emery board to rough up my skin first.  You should have heard me  in Phila. - it was on the skin that was radiated and that is still so sore to the slightest wisp of a touch.  I can't even clothe the area and she was going rub it so they got a better reading.  Then she said I couldn't take a shower tonight because of the electrical leads ---I said this test is not going to happen.  I may not keep the wires on 24 hours.  After she attached everything [which first I made sure were sterilized from the last patient],  she told me to carry on normally so we went to kickboxing.  It was hard because I have a recorder in a leather pouch with a shoulder strap so it bops around and up and down as you move.

 

3-17-03

At least we are off our very weird schedule - this weekend was very exhausting, especially for Alan.  He took the motorcycle course in Gloucester Community College [an hour and a half away, each way].  So Friday night he got home about 11:00 and had to be there the next morning at 6:45 a.m.   So it was up at 4:00!  Me too.  He did pass the written test yesterday with 100.  Tonight his mother told us that even as a boy he always talked about getting a motorcycle, even before a car. It is very difficult here in NJ to get a license; he has been looking at the process for years.

 

Yesterday was the driving test and he was worried but he passed so he got his license.  One lady failed because the cycle dropped.  That is a no no.  The class was made up of a musical conductor, 2 police men, a NY architect, etc.  All professionals.  We have learned here that mostly all of our drs. have motorcycles.  The Hell's Angels image is going.

 

Alan came in at 6:00 on Saturday and we had to leave at 7:00 for the Stockton College performing arts center.  We had bought tickets last fall for the one man [and pianist] Groucho show.  Alan always wanted to see it. You 2 would love it; it is up your husband's alley.  I rate it an A ++++++.  It was terrific. The only problem is I dislike immensely being in crowds.  There was so much coughing and nose blowing and the seats are so  close together, like the man next to me was much closer that I ever would want.  And the lady in front of us had on a perfume that smelled like one of those magazine inserts and all I could do was cough because my throat was closing up due to it.  I really don't want to do that again - movies, shows, crowds. 

 

Our primary, Dr. Anastasi, called today and he still wants us to watch my leg because he is not sure what it is now. He was surprised that it is not a lipoma but he told us what to look for.  He is a great dr

 

3-18-03

I don't know what to speculate about my leg thing.  I would hope that it is a contorted muscle or something.  But what do I know - just once in a while that leg gets a muscle spasm and knot.  Weird. And very painful.  Time will tell.

 

Today a $250.00 gift certificate was promised for the auction, by the  furniture store in Somers Point.  We just can't believe all this generosity.  Then a manufacturer sent us 24 DOZEN tees to be used to give out to neck radiation/surgery patients. 

 

3-20-03

 

my pulse has been over 100 since the jugular was taken.  The monitor confirmed that; I need to get in touch with the dr. - the report says something about a blockage in a bundle and a few other things I don't understand.

 

3-21-03

Today we went over to Boardwalk Bank - - - they donated 200 'chip clips' for the luncheon gift bags, next year.  The aerobic-thon bags will be nice and full. Next time we see you, I will bring the poster Alan designed.  We have one printed out for you to check over before we mass produce them.  We can read it a dozen times EACH and not catch any errors. 

 

3-21-03

The damn cardiologist never returned my calls; now I am starting to get in a huff.  So I have no answers what it all means.  Sinus rhythm may be involved - I have no clue yet.

 

3-22-03

We are dealing with another consumer issue.  The one thing that was supposed to be fun is now a hassle. Nothing is easy. He first ordered a Yamaha. Well he gave a $500.00 deposit and they called and said they wanted ALL the money in advance before they order it.  I think not!!!!!!  No motor vehicle sales is paid in full before you pick it up.  Alan tried to reason with them and got nowhere.  They said it 'was their policy' so IF it was their policy why did they only ask for five hundred when we were there Monday. 

 

We put a dispute in with the credit card company, went to Honda and ordered one from there. This better go smoother. Meanwhile he compared prices of the original bike and found out from another YAMAHA dealer that the first one was overcharging him on many things, especially what they call freight. 

 

3-24-03

We were up early today to take the rifle course at the state range.  Now that we passed, we can go back and practice with the range officers anytime we want.  We got NRA certificates and I hit my 'pie plate' target nicely.  It was an excellent course, emphasizing safety, first and foremost.  We learned a lot and enjoyed the teachers and our classmates so it was a fun morning.  Alan had gotten a new rifle that he never shot so it was exciting for him.  It is a M-16.  It is a modified version of the assault rifle [NJ makes the manufacturer put certain modifications on it so it is not the same as the original army version]. We are ready in case any enemy ships land on our beach and try to take over our town.  During WW11, we heard from older citizens that the ships WERE out there, in the Atlantic ocean , right off the beaches...ships from Germany , etc.  Fascinating. 

 

3-25-03

The bottom fell out today for us.  We have a lot to deal with all of a sudden. After the CTA scan [which I had this morning and I had won at the Ride the Wave auction], a few hours later, the radiologist from AMI called us and asked us to come back over.  It was so ominous that I was frozen to the chair and said please just tell us and we'll come over another time.

He said the coronary artery disease the scan showed is very significant and needs attention but that is secondary to bigger problems I may have that need immediate attention.  He said their are new spots on the lung and he sees a lymph node that must be addressed, and a finding at the juncture of the aorta.

Life just stopped and we started calling some of my doctors.  Dr. Kelly, my surgeon, called and said he wants to take a measured approach and sit tight until I get the PET / CAT [about a month until the new instrument is up and running].  He wants us to try not to worry until there are tissue samples taken and examined to confirm what the radiologist hints at.  He said this CTA test is designed to test vessels and not measure cancer growths and he'd feel better finding tests to evaluate the problem.  It all makes sense so we are using this as a calming mantra, to the best we can.

 

 Dr. Kelly said taking a biopsy is not that simple; so far the size of what the radiologist found is very small and a needle could easily miss it.  It would have to be a Needle-guided CAT scan biopsy and even then it is not certain they will hit the right place.  He said he hates hunting expeditions.  Of course there is always exploratory surgery to find the spot.  Which doesn't sit well with him...or us right now.

 

He was most calming even though we are still really concerned that we don't know anything for sure.  He tried to assure us and prepare us for the fact that any abnormality with me from now on is looked at seriously.  He thinks the radiologist was out of line for speaking about all the problems he saw without benefit of talking to my drs.

 

Dr. Cassir, the radiation oncologist is of the same mind but said I should have a Cat scan of the lung if I can't wait a month.  The radiologist today said if I could get an appointment at Sloan Kettering sooner than their machine will be ready, I could go up there.  Truthfully, I don't feel like it. We were hoping that after the last assault, we could put it behind us just for a little while.

Yes...today we are doing better at it.  Dr. Kelly was most calming even though we are still really concerned that we don't know anything for sure.   Even if the next scans are okay, there's always the reality that some time the news will come up against me.  It is a cold sobering process when they deliver news about you that is so devastating. 

 

We tried to pretend we were doing some normal things today, like starting spring with a Rita's water ice.  It was a good omen - for years I have been hoping we'd go there and they'd offer cappuccino...so today that was on the menu. 

 

We stopped at Home Depot for some plumbing parts and I threw 3 dozen pansies in the cart, one orchid plant, and a palm tree.   That should perk up the 'estate' a little for its owners.

 

And tonight I did a brave thing; I consented to going on the back of the cycle with Alan.   Here's the scoop - I like the clothes [tomorrow we'll take a photo ---I was too scared today].   The ride around the block was scary.  He loves it - et moi!  It was totally frightening to me, and I am sitting there thinking how the last day was so frightening and this ride was to be exhilarating but instead I was thrilled to get off of it.  I suppose I will get used to it.  We stopped after a block and a half at the town gazebo and talked to the Mayor who was hanging a 'support our soldiers' banner.  Another good omen - he went to the same high school as me and gave me a 'fight Lincoln fight' button tonight.