March 20 to June 6, 2004

 

4-20-04

My medical oncologist let me miss a few injections this weekend so that was VERY nice.  Three doses a day are potent but I was able to get enough energy to make it through.  I started back on the schedule Sunday night.  I missed the thrice daily punctures; there were too many areas on MY BODY THAT WERE NOT BLACK & BLUE.  And I was starting to heal - we wouldn't want that, would we?

 

I don't ever envision that many actors at one time again.  It was awesome.   It would have been great to be a guest there.  The part The Taj Mahal played in their weekend though, was like daycamp for adults.  The actors LOVED the desserts, 5th Dimension, and especially the Kasbah. 

 

 Alan and I were in awe over the scope of desserts [to me, chocolate is a major food group]. It is medicine.  Better than any cancer therapies that have been tried.

 

Not to mention how the 5th Dimension sounded; it brought back such memories.   When I taught in a Philadelphia high school, we'd chaperone the senior proms.  To their music.   We never expected all these facets to one fundraiser.  The 5th Dimension is Trump's favorite group .  

 

That is all they kept talking about on Sunday.  In fact, they left your casino so late,  many overslept and we had to wake them up to get them to the ballroom for the luncheon.  Cameron, especially was very impressed by the club.   SO if they ever tell me they are coming back [for recreation], you will have to go and meet them there.  I'll tell you first and we'll plan for you to finally meet them one on one.

 

4-21-04

It was so touching that your fan club took the time to collect money for the Foundation.  We continue to marvel at how great people are. All of my drs. were there and they are so motivated to work on this rarity after seeing the support we got.

 

4-22-04

The local press did not cover the event; they are a weird publication. But
there was a horrible bus situation.   The press wouldn't cover the luncheon
but somehow they found out how the actors' bus broke down on the way home
??????  We found out about the disaster 2 hours after they had been sitting
there and had trouble getting the company to get them limos or other
transportation back to N.Y.C. [for 5 hours they sat at the rest stop].  We
tried on our own to find them  alternate cars and had no luck.  What a time
for those poor stars. And the bus company took OUR credit card number that
they had on file,  and used THAT instead of their own resources,  to find
the alternate transportation back to N.Y. C.  Dispute city here.  Actually, compared to the house from hell, this is small poe-tah-toes.


This is one count of fraud - unauthorized use of our credit card.  We did NOT give them permission to do this transaction.  The number should have been destroyed after they used it for the bus round trip [that they charged to the Foundation credit card THREE weeks in advance of 4-18].


 When in reality, they should not charge us for the limos because according
to the contract we were to transport the actors back on a celebrity luxury
bus with bathroom facilities .  SO  as per the contract , they should refund our original payment.
Well, my forte is big consumer fights.  SO I am ready for one with them.

 

We are still dealing with this snake of a bus company and haven't seen a credit yet.  We are finding  the owner reprehensible to deal with  They lied to us that help was on the way or we would have asked our neighbors to get some cars there and take the actors all back. 

 

Then the bus company charged us twice for the same service.  This is a second count of fraud ---double billing. 

 

Originally they put through on our credit card, the round trip fare for the bus and they put it through on March 25.  I knew that we had to pay prior to the date of service but I was surprised that they charged it so far in advance. We're working on a tight budget.   We asked them to forestall putting in this amount till then and they refused.  IN addition they added in a large tip, which according to my upbringing in the 1960's, should be after exemplary service is performed.

 

Incidentally, we sent letters to this company in October, 2003, as well as several others, asking that they donate their services for this event.  We have an email from Darren agreeing to do so and then he went back on his word. 

 

And the always eternal problems - like the room the actors were brought to right before entering......many of the volunteers crashed the place and were asking for photos and autographs right before they went on [and here all along we were worried about the fans!]  We went crazy and had to have them all thrown out.

 

One lady told her friends to wait beside her and she'd sneak them into the room where the stars were waiting to come into the ballroom.  Different people's stories helped me piece this together.

 

4-23-04

Arts and entertainment can be such a wide spectrum - - - all the various choices this great country offers are frequented by different segments of our population.   We knew what a popular vehicle this would be to raise money. But it also means dealing with a lot of peculiar fans.

 

30 people said they'd be at the event and didn't show up and we have to pay for the meals anyway.  If they had had the courtesy to call, we'd have made more money because we'd have cancelled the meals.  People just don't think. Even though they paid for their tickets in advance, the meal had to come out of that. SO it was less profit when they didn't show or call.

 

   EBay opens it to the country so we will let you know how much they sell for. We are astounded.

 

The EBay Auction is one way to maximize the contribution. We have had wonderful results using EBay in the past because it reaches an international audience.

 

Naw, the neck feels the same.  SOmedays it is so tight, the skin feels like it will burst.  And then other times it is actually sore.

 

The bus co. is not begging but continues to lie, like a rug.  First it was to be a credit. NOPE!  Then it was to be a check fed-ex ed to us.  NOPE!  Now they are mailing a check.  My ducks are getting lined up.  They won't know what hit them if they don't satisfy me quickly. 

 

SO tonight I sent my letters to the attorney generals offices.  Tomorrow we go to the police station to report credit card fraud.

 

I will send out 5 letters a day on the internet to transportation and consumer and government agencies.  It is easy with copy and paste and send.  Over the next  4 months the bad boys will be getting calls, staggered.  It will be retribution to know they can't get rid of me.

 

Well, today I implemented my 'fighting back' plan with the bus company.
Till today it was child's play.   God gave me a purpose so I must carry it off. I told Alan, as I have for the last 2 years,  if I stop working on these issues there is no reason for her to keep me here on earth, right?  By the end of the week their heads will be spinning like in the Exorcist movie. 

 

Alan's main concern, however, is for me. These events Sunday really upset me, which is the last thing I need on top of cancer treatments. These stress the immune system severely and I don't need further stress to impede my health.  I worked very hard on planning for this event last Sunday and tried to make everything perfect. 

 

 My sister and I remember my mother's last weeks in 1972 as if it were yesterday.  She needed 100 pints of blood before she died; all from over radiation [the burns hit a blood vessel]. 

 

But eventually, it fades, as you know - you don't forget but your mind tilts other memories forward, thank goodness, better ones.

 

4-24-04

I get scanned the 10th of May and we'll see if it is helping keep the tumors at bay.   Going from shot to shot.  They tired me out severely and sometimes I feel like I am in a big blur.  SO I try to keep pushing.

 

4-25-04

We are kind of tied to this area for now because of the injections.  We don't feel like we need a vacation away since we live in a resort.  We just want to take advantage of some of the great activities here for a while. It has been hard to get away from the fax, email, phone, and mail.  I'd be thrilled to have the time to clean a closet or take a walk. We did that today - we went to the Ocean City boardwalk.  

 

4-26-04

Today the credit card company said they would not continue the dispute - we paid for a service and got it, so they are clueless and we were fuming.   I lost it and told the woman everyone at Advanta is ignorant and stupid.

Only because 2 law firms want to take this case pro bono.  I need to speak to someone in the C.E.O.'s office next.They have an 800 fax number so every few hours I send a 20 page fax [hahaaa] and hope to find someone who is literate.

 

That's the Barbara we know and love..............and the bus co. will love to hate!

Go get em.

Nancy

 

4-27-04

You said it perfectly.  It is like walking thru your TV screen, I feel.  The first time we went to one of these luncheons, my feet were above the ground for days. 

 

The I.V.F. cycle was up today; it sold for $4350.00.  Totally incredible. What an item!  What a dr. to donate it!  We have a few dozen items left over and a  Lunch with Rebecca Budig sold tonight on EBay for $3425.00!   But it helps the Foundation tremendously - we certainly found a wonderful venue.  SO much easier than  the big luncheon.

  

4-28-04

You are a gem - truly the best friends ever.  All you did last Sunday, with a constant smile, and offering help out of this credit card mess. 

 

4-29-04

Now here's the big laugh with the bus situation.  When I called to talk to someone at Advanta [the credit card company] they said to put Alan on the line; THEY WERE NOT AUTHORIZED TO SPEAK WITH ME SINCE MY NAME WASN'T FIRST ON THE ACCOUNT.

 THEY COULD NOT TALK TO ME BUT THEY SURE TOOK THE CREDIT CARD TRANSACTION FROM A TOTAL STRANGER LAST SUN. NIGHT, that Alan did not authorize,  RIGHT??????

 

What I used to say when I taught and had to miss a day is "Will the kids miss this day in 20 years from now?"  "Will it make a difference in their education?"  But most of the ones we had at Frankford H.S. didn't graduate anyway.

 

5-6-04

Monday I will have another combination PET / Cat Scan to see how I’m “doing.”   Without these modern miracle tests, I don’t ever really know how I’m “doing,”  until the drs. tell me.  High anxiety time.   How I “feel” never seems to have any correlation with how I’m “doing.”

 

When I was initially diagnosed with cancer, I had never felt better in my life. But, an army of medical doctors was telling me I was in deep trouble, health wise, and I had to take some pretty drastic action ASAP. Since then, the worst I have felt was when after the surgery across my neck hemorrhaged and the radiation had burned my esophagus so badly I couldn’t eat or talk. The partial lung removal a year ago wasn't as long an operation [4 versus 9 hours]. All these left me different physically than I was before; so many different side affects.

 

Alan told me you called but my voice has been shot most of the time - if it is a side affect of the drug,  but who cares at this point since other issues are so major.  So I do email. ..about 4-5 a day ---I am very tired.
About 60 come in each day. I am so behind.  It just really hurts to strain and talk.   But the bigger picture is if this torture is going to work.   We go for scans on Monday.

 

Here's another of my consumer sagas.  When I picked up my new glasses, lst night, as soon as I put them on, I knew something was severely wrong.  Every image was distorted, almost tall and narrow.  I could not keep the lenses on  without feeling ill. 

 

The optometrist examined my older pair and found the prescription the ophthalmologist's office gave me had a difference from my old prescription.  I know when I was there for the exam there was 'no change.'  They compared the numbers and said the problem was with the left eye . They feel someone left off a 'one' and that changed the entire correction to one that made it so I couldn't see. 

 

The glasses will have to be re-made. 

 

I faxed the dr. and asked him to explain how this happened.  Because of someone's carelessness in transcribing and not checking their work over, I have endured inconvenience from the added travel back and forth  and someone has to suffer a financial loss due to the glasses having to be fabricated again.I am not going back to him.  He messed up Alan's glasses last year [remember-he added a prism that should not have been there].  I hate buying things.   He is too busy making TV commercials and not checking his work.

  

Good news.  The compassionate use committee is approving another drug for me - now it goes to the FDA.

 

5-8-04

Today's mail surprised us so much that we  sat in disbelief.  One of the main actors, Cameron Mathison,  on "All My Children" sent us an envelop filled with checks that one of the walk-on actors took it upon himself to collect...all for thymic research.  This wonderfully dedicated person really went to bat for the Foundation.  It is very impressive that there are people like this that give help and support. He did it anonymously but some of the larger checks have addresses so we can send proper thanks. 

 

Actually, depending on how my scans come out Monday, we may go up to A.B.C. in a week or so.  Mainly to visit Cameron and a few others. There is a Pre-Daytime Emmy party that one of the agents throws and she put our names on the list.  But, first things first.

 

This will carry me into Monday's scans with a nice aura of hope.  They just added some abdominal scans to the list because that whole area has been feeling a lot of discomfort the last few days.  My skin feels too tight there as if my insides are bulging out.  Now what is this - reaction to the drug, liver damage from it, or hopefully a local reaction to the needles.

 

Monday   I go into the scanner about 9:30 for about an hour so think of me in a safe, protective aura if you have time.  We pray the Octreotide has kept the tumors in my chest stable and they have not grown since the scans 8 weeks ago. It would be good news to have held them back.

 

5-10-04

Yes we were the spearheads behind the event. We can't believe we did so much work either - people volunteered to  help but...well you know what happens.   Since no trials or research have been done on this type of cancer [it is so rare and the patient base is so small], Alan and I felt that my only chances for survival were to take matters into our own hands.  No one else would - it is very scary to be all alone - but through the Foundation, we have been contacted by dozens of others and at least we [and our drs.] can help each other.

 

Thank you so much for remembering about today and the prays, especially.  It was very touching [as people we have known forever did not even call to wish me luck] - but we are all in tune with each other and know what the ordeal entails.

 

Another day, another set of scans.  Now the wait begins.  The test is always tough - drinking 2 bottles of barium, the TWO radioactive injections which require the needle staying in my arm 2 and a half hours, and the strapping down on the scanning table.  Today I had a tickle in my throat at the beginning and couldn't stop coughing.  It has been this way each day since the lung surgery last May.  They didn't come in the room, even as I called them.  I needed water and did not get it.  It was a bad scene. I took benedryl in advance as a preventative, but it didn't quite do the job.You lay there in a daze, if you're lucky to be able to immerse yourself into a Zen state.  At one point I saw the blue protective aura everyone was sending me. That was so reassuring.

 

The radiologists I know are not there and so I can not get information from the new ones. They  are super busy.  Because I am there so much, the old ones used to  say I am part of 'the family' there.  What a distinction I could do without. Anyway, if there is no news tomorrow, we will call the other facility where the old ones I know are and see if they can get me some news.  I tried my medical oncologist at Penn; she was out today [her little girl had adenoid surgery].  That doesn't help.  I called my radiation oncologist and he said he'd see what he can do.  Never heard.  I called my endocrinologist, Dr. Check - his nurse tried with no luck.

 

It drives us crazy...the not knowing.  The tech who did the PET scans gave us the films that we will take to Phila. so my set of drs. there can do some interpretations for us and put us on the correct path.  Deja vu.   The CT scans were not ready.  Anyway, we laid them out next to the last ones to see if we can figure out anything.  All I know is the tumors are still there; we can not tell anything about their size or the intensity of the brightness.

 

5-11-04

My radiation oncologist did call today and he said he said he got the report and it looked good. I guess compared to what they expect in our cases, it is good.   A couple of the tumors in the chest are the same size or a bit smaller so that could mean the Octreotide is keeping them at bay.  The brightness/intensity also was a little less so that is encouraging.  The one negative finding was some paratracheal lymph nodes looking brighter and larger than the last scan.

 

Scoreboard after scoreboard. I like your description - keeping it at arm's length sure is better than at our throats [what irony is there in that since that is where it all started].  

 

5-12-04

You have to give a plug on one of these Friday nights, for those wonderful researchers at Novartis - without their intelligence and persistence, you and I wouldn't be the recipients of these new drugs. Because of them, we get the privilege of you being able to say our names each week. It is so ironic we are both receiving Novartis miracle drugs.

 

Your good thoughts are treasured by my and  are one of the forces responsible for this miracle this week  - the visualizations, the encouragement, and the brocco sprouts [which I put in mashed potatoes the other night and in macaroni tonight].  There are angels out there looking out for us. I am thankful for that.

 

So to answer your question, the injections will be a permanent fixture daily since they don't want to tamper with something that may be helping and they don't get any easier...just harder [I am out of non black and blue skin to put them in and the side affects are accumulative].  If I stop it,  they are afraid their growth will continue. So it is a catch 22 - and kind of life and death.  Can't gamble since they know so little about this.

 

5-14-04

No pain or fear.  Sounds good to me. 

 

That is what I pray for too.  Somedays more than others.  I have had some coughing problems that started about the this time last year after the lung surgery.  The choking can be bad and unrelenting at times.  I think that all the radiation plus the 2 surgeries and now the drugs I have received to fight the big C have weakened chest area and the ole immune system.   And I have always been very chemically sensitive but now  I am allergic to whatever it is that comes near me.  The dr. told me today he sees nothing in all the films that would indicate why I am coughing.

 

Today was spent with my local radiation oncologist.  He said he'd be interested in hearing the opinion from the doctors in Philadelphia, on the report from Monday. I guess compared to what they know about this type of cancer and expect,  we just have to pool all their intellectual resources and try to make the best decisions possible.

 

 But I am back to the reality that every cancer is a killer and even though I am not cancer -free yet, I, am still here and way ahead of the game.

 

Thank you.  I need all the luck I can get. My dr. today told me he believes in energy and all the forces in nature for healing.  He is always telling me how it is a multi-faceted approach to getting well, not just his technology. He was listed in Phila. Magazine's top drs. under radiation oncology.

 

But even though he is the best, I still maintain that the list is MEANINGLESS.  Dr. Brady was not in it.  Dr. Kaiser was.  Also my neurologist from here was list.  But that horrible oncologist in Somers Point was on the list.  The one from last March [2003].  You know, all a dr. has to do is get people [patients and friends] to send in an email form and it is whoever gets the most in, gets the nomination.

 

But we feel relieved enough to make the trip up to N.Y.C. on Thursday.  And what a coincidence that you will be in N.Y. the same day.   

 

Maybe we can somehow meet.  The party is in the Bowery at the "Boulevard."  We noticed on the invitation, that we could make reservations for dinner, first.  If you want to try for that, we can call for reservations.  Maybe some of the actors will be having dinner too?  Would that be a kick or what.  What are we thinking at our age?

 

5-15-04

Heard a neighbor's daughter had a tumor taken out of her neck by a local yokel dr. .  Since the surgery it 'sweats.'  SO the dr. said to put anti-perspirant on it.

 

5-16-04

I know how you feel about recovering in between.  These shots are getting to be cumulative and some days I just lay around in a daze.  Once in a while I just treat myself to only 2 per day instead of 3.  Especially since I have some new side affects.  I know, I know - it is playing with fire, but at times I need a break from it all.

 

5-17-04

For the last few  weeks,  my  abdomen feels very tight from the inside out, bloated, or like bound in a girdle [for lack of better words].  It is not as noticeable if I stand or lay down but the discomfort is still present. 

 

At first I thought  this discomfort could be a local reaction to the needles [I try to only inject one side of the abdomen once a day and for the other 2 Octreotide injections, I use a thigh or arm.  From the very beginning, the localized inflammation has been very apparent...a 2 to 3 inch diameter of red, raised, painful skin. This lasts about an hour. Afterwards, it can be hard and lumpy. 

 Sometimes it is lumpy and / or black and blue for days afterwards.  And after the injections on the upper arms, there is pain under the armpit for several days. In fact, so as not to get any false positives on the scans last Monday [5-10],  I stopped using the arms for injections in the middle of the  week before. Then when I felt the discomfort in my abdomen, I decided not to use the abdomen either until after the scans.   That did not leave me too many places to rotate the doses and I was really miserable using the same thigh and rear over and over. 

Since I ran out of sites, instead of having them every 8 hours,  for a few days, I tried every 12 hours [2 times per day] to see if the abdomen felt any better.  There may have been a slight to mild improvement.  It makes a bit of a difference feeling more comfortable in my body.  

 If I extrapolate, the same reaction I had under my arms, could be at the abdominal sites.

A long day up in Philadelphia.  Dr. Brady is pleased about the tumor size but there is an abominable abdominal problem brewing.  On the January CT scan the gall bladder is a normal size.  Then, now, after 2 months on the Octreotide, it is enlarged on last week's scan.  This explains why I have so much discomfort. I knew it wasn't normal what I was feeling.   Dr. Evans said I should see a g.i. dr.  If it gets too large, it has to be removed.  You know my terror when I heard this. They do say the drug can affect the gall bladder.

 

The medicine is starting to work but do I need more pain and surgery if I continue. It is terrible and cruel and hurt like hell to hear these words. I am only doing 2 injections today. I went on strike.

 

As much as we yearn for a bit of normalcy [even a year would be nice], probably we will never get it and yet other patients with other types of cancer get a year, 5, 10 ,14...jealousy...

 

My cough is all day but at night, most of the time, I can sleep a few hours at a time [with lots of pillows].  Sometimes a cough wakes me up. Lifesavers help in between the cough syrup but they changed the old, traditional flavors. Did you know that.  Awful watermelon and tart blackberry.

 

5-18-04

We went up to see her [Dr. Tracey Evans at H.U.P. - Presbyterian: she's the one prescribing the Octreotide] and she looked at the films from the January, 2004  CT scan and then the recent CT scan from last Monday, May 10th.  I also had some blood work yesterday - most tests are normal [not the T.S.H. - the Octreotide has been toying with that too].

 

We told them you were our one and only G.I. guy.     They also then suggested an ultrasound of the gall bladder so I suppose I'd need a script to take to A.M.I. ---unless you can think of anything else you'd need me to have.

 

She wants an ultrasound but wouldn't write the script since that is not her area [I thought that all kind of odd; well, annoying, since she prescribed the drug].

 

5-19-04

DO you get that all the time ---"you look healthy and so good" blah blah blah.  People say I am the healthiest LOOKING sick person they know. It really rankles me because the ravaging is going on inside and what do people expect me to look like anyway. If they say it once, fine!  But when they stand there for 10 minutes saying how good I look it is as if they are saying, "you look good so therefore nothing is wrong with you."  It kind of minimizes what we have.

 

5-21-04

you are one of the few that understands.  I have been getting very annoyed at people's reaction.  They minimize the entire surgery by saying stupid things like it can be done differently than years ago.

 

Well first of all, I had 2 torturous surgeries and am scared to death of any more, especially now being more immunosurpressed than I ever was before from this drug.  SO it isn't simple in any way now to have any procedure.  People don't get it.  there is also the problem of incisions because they can spread the out-of-control al quada more quickly.

 

I think I will try to embarrass the al quaeda and sick pitbulls after them and point at them and make them parade naked in my body.

 

They do say the drug can affect the gall bladder in 68% of those taking it. 

 

5-22-04

 As for people, we know TWO poor women now that had gall bladder surgery.  One had it a month ago and has been back in the hospital 2 times for repeat surgery [IN ONE MONTH!].  The other lady had it several months ago and hers opened up somewhere inside.  Both seem to have oozing infections.  AND THEY WERE HEALTHY TO START WITH! Isn't that a kicker. SO for those twits that minimize the seriousness of the surgery,  they obviously have not had anything like it or know anyone.

 

5-23-04

Except I have one 'friend' who has nothing wrong with her  and she is dying to have a CT/PET scan to see if she has any cancer cells.  She is a wannabee.  Can you imagine,  she actually wants something to be wrong with her????????????????

 

Yesterday someone stopped me and said how white my legs looked.  I wished she had kept her mouth shut; I never had a comment like this before - I have always been medium complexion and tan easily though we hadn't been in the sun yet this year.  I told ALan and we think the medicine has done something because my skin looks a sickly white color.  Something else to check out. Don't we know the stupidest people in creation.

 

5-24-04

 

The imaging place I go to always tells me to drink a lot afterwards to flush out the barium. They give Alan orders to take me out to breakfast. 

 

5-26-04

We sit on our own beach, with Longport people, away from that old crowd. I hope that doesn't sound snobbish.  We outgrew those people ---most did NOT support the Foundation at all. Only 4 couples from the old crowd came 4-18.  We need to spend time with those that try to boost our morale now at this time.

 

 Our beach has showers and bathrooms. Art and Marcie Freiberg came to sit with us Sat.  On Sun. we sat with some neighbors.  Sometimes Sherry and Neal come to sit with us. Bonnie and Rich came last year.  It is just so pleasant.

 

5-28-04

The tech told us he didn't see any stones as he was doing the test. There are substances [like bile salts, etc.] in the gall bladder that don't belong, probably because it is not emptying properly...the drug causes that.  It is some ‘sludge.’  That is actually a medical term - it refers to an excess of bile, salts, crystals, etc. that gets stuck in the gall bladder.  Octreotide causes it to form.  The Octreotide works on a muscle in the gall bladder, not allowing it to open so the sludge doesn't leave and builds up.  Eventually it can make stones. Maybe the discomfort I feel is a combination of the entire abdominal area.  The radiologist suggested that too, the other day.  

 

5-30-04

Tomorrow is that free brunch we go to every year.  Last year I couldn't stay because I had just had the lung operation and wasn't doing great.  The year before was when my neck was slit and the radiation had been going on for a month so then I couldn't talk or eat.  SO this year should be an improvement.   This is the one I always write you about - the one where the Mummer's play and dance,  he hires a Jack and Jill truck, and he always has surprises. 

 

They haven't much [if any] experience giving the drug to patients like me.  As for 'after treatment' ---whew ---I only wish I could look that far ahead.  The way we understood this I am on this indefinitely.  It doesn't get rid of cancer, only helps slow down its growth.

 

At least you know it is all benign.  I would love to hear those words and am losing patience when we don't.  Having tests and waiting to see if 'it' has come back is sheer hell and a constant.  Alan and I spoke with this wonderful professional from Gilda's since in over 2 years there has been absolutely no reprieve.  If it is something that wouldn't be incurable and fatal we could handle it a whole lot better. Those are the only words drs. have used with us.

 

They just don't have the heart to handle this subject with us. They never answer our questions along those lines.  We have had to read the brutal truth in their reports and in medical articles.  The main adjectives are that the type I have has "a poor prognosis," "it is a very aggressive and fast growing cancer."

 

Life is very different now. I read your email and see how different our lives are. You are lucky to have the ability to change your care. Nothing more Alan and I can do except find our own researcher  so no  sense thinking it could be any other way at this point. 

 

We took a short ride the other evening after dinner on ALan's motorcycle, to go get soft ice cream at a custard stand out on Ocean Heights Road, Lloyds. I totally enjoyed it - it felt like a date.

 

5-31-04

With shopping, I go thru phases; I don't want to buy anything a lot of times.   It is hard to explain - I guess it is a depressed feeling that 'why buy - I may not get to use it.'  Before each surgery that feeling was very strong and once in a while it re-occurs.  Material things just don't do it for me any more. 

 

Lost my courage - and went back to 3 injections a day.  But about once a week, I give myself a treat and just do two.  I started to feel terror - what if that one per day costs me my life by not keeping the bastards in check. 

 

One story - person with gall...this idiot behind me wanted my attention so started tapping me on the arm.  I spun around and yelped for him to stop. Annoying son of a bitch - every inch on my arm and legs is black and blue and painful from the shots I told him, which I shouldn't have had to.  I just hate when people invade my space, my personal space on my body.  People just don't think when they are around people that are getting medical treatments. I really almost hauled off and hit him. A few people - and I abhor this normally - have a habit of hitting your arm as they talk to you.  Do you know the kind I mean.  So now I just back up and keep backing up and if they don't get the hint, I let them know not to touch me. Some of them can make you motion sick from the aftershocks of their prods, let alone the pain of their hands hitting your skin.

 

6-3-04

Unlike my friends who have had lymphomas or Hodgkin's, my drs. have never used any words with me that have to do with prognosis or nature of what Thymic carcinoma really is.    My friends often say their drs. tell them that whatever way their cancer takes a turn, they have a treatment for. NO one has ever said that to me; I feel really left out.  So to answer your question, the treatment they are trying now, is a shot in the dark.  They really have no idea what works or what to do. There is no patient base to draw from.  It is very harsh to read that, I  know.

 

6-4-04

 

they did not test for lyme.  They forgot.  And I threw a fit.  They took 9 tubes of blood and yesterday told us they forgot to do one test---the one the dr. sent him over for in the first place.  I told them to find his tube as quickly as possible before it is thrown out and do the test.  Luckily they found it because if not I was going to write a nasty letter.  I still may. My energy is not what it used to be.

 We were at HUP today to see the thoracic surgeon's - the great Dr. Kaiser -  it has been a year since my lung surgery and he was pleased to see the CT and PET scans of my chest tumors responding to the Octreotide.  We were pleased that he was pleased and didn't want to do more surgery. Whew.  You never know when you go into their offices what they will suggest.

 

My sister drove down and met us so that was very nice to have the moral support as well.  Those visits take a toll.

 

What happened with Laureann.  I hope she got relief and was able to go home.  This is the problem with cancer therapies ---they are so strong and toxic that they cause all kinds of distress for years to come.  ANd I am talking serious problems, like a neighbor had lymphoma and got chemo and then needed heart surgery from the damage the drugs did. It all stinks.

 

6-6-04

I went thru the ultrasound series of the upper abdomen, pancreas, gall bladder, etc.   They didn't see any stones.   He also thinks it is affecting my intestine by making it sluggish; I am sure he is right [the defunct thyroid does that too].  My synthroid is not perfectly adjusted yet.

 

I forgot to tell you that the other day I called the hospital to get Alan’s blood tests and the girl was looking it up in the computer and I heard a man in the background say his name. I figured it didn't happen, for real.

 

When we got over to the hospital, the man was the one who brought out the report and he said he was faxing the results to our dr. at the same time we called.  Anyway, when I called to say that one test is missing, he said the instrument was broken and the technician was there to fix it. Then we heard a scream.  Something fell and hit the tech on the head.  Will the test ever get done?

 

We went for Alan's test result today, the missing one.  It wasn't in the envelop - but a repeat of one we already had.  We marched up to the lab director's office and I nearly exploded at the incompetence.  We got the result!  And the phlebotomist was already reprimanded!   But I gave them more to throw at her - she didn't label Alan's tubes for 15 minutes and kept wandering out of the room, leaving his unlabeled blood on the table.