August 19 to October 10, 2004

 

8-19-04

My appetite is better this week.  The coughing is a smidge better at times.  But something else happened on Tuesday ---I felt a twinge of my trigeminal neuralgia pain as I ate.  I am upping the neurotin so maybe with luck I can head this off at the pass.  I don't enjoy the neurotin [I become a zombie] but the pain of the t.g.n. is the worst ever.  I hadn't finished winding down the dosage from last year's episode [remember how excruciating it was in November around Thanksgiving].  I was down to 2 pills a day [at its worst I took 12 pills a day].  Now I am up to 6.  Have to titrate up slowly.Crap.

 

8-20-04

Thank you for the good luck with the TGN.  At least with the neurotin started early and plentiful, I am not any worse and I hope to keep it this way.  These shocks I can handle. I am sleeping a lot though because I am up to 7 pills a day.  We don't know if this is from the new drug or not. 

 

we just took some chocolate cake to Dolores and Arthur [he is the one with Alzheimerís]. Since we knew him before, this is just horrible.  Your medical explanation of the brain made sense.  That was very poetic, dying by inches.  Arthur seemed a hair more aware at times last night.  Most of the time he sat dozing or staring.  The only word he'd say is "yes."  Once Dolores brought out his baby picture and we were all cooing and he looked up and gave a huge smile. I asked where he went to high school and Dolores said Central.  I asked Arthur if he knew our neighbor and he said No. For three years all I have heard him say is yes.  He will never improve but those few glimmers were a help to us all not being too depressed.

 

8-21-04

I can drink coffee and I usually do have a cup in the morning since all this began [or I'd never wake up].  Every once in a while, good properties are tooted about it.  Or I'll have Pepsi or tea.  I am up to 8 pills per day and thank God, it hasn't gotten any worse; I could live with this.  But I am so in a fog - in a second, I could be asleep.

 

I did try to take a walk to the MAC machine today.  And after a decent rest, I cleaned a few windows.  That wore me out.  They get very opaque here from the salt air spray [wind and rain makes it worse].

  

As for side affects from the mefipristone, I am not as queasy, and the sweats are the same.  My left lower back is still painful at times and the pharmacist said all these medications can cause damage.  I forgot.  Many people I know that had chemo have permanent nerve or muscle damage.

 

Everything they can give you causes something. Who knows ?  maybe the drug caused the tgn to come back.

 

8-23-04

 

You are right about the pharmaceutical companies - they keep lowering the ranges of normal for so many constituents in our blood so more people have to take drugs they make a mint on.  For example, blood pressure meds but notably the statins,like lipotor and mevacor [it seems as if every one needs to take them for some reason if the pharmaceutical companies had their way].  They have sold a bill of goods to every country in the world that in Europe they are thinking of putting statins in the water. England has an over-the-counter statin.

 

We just enjoyed a wonderful  afternoon  with Jerry Check yesterday.  We made him one of the doctors on our board; we were invited to his new house in Elkins Park [well it was built in the 1890's].  Built for a Widener.  By the architect Trumbower [sp.].  He's been there a month and he  has dinosaur eggs, mummy sarcophagi, ancient ivory carvings, and so much more...... like  a museum. The fixtures and furniture are intricate carved masterpieces.  Some signed, some made in France, or far far back in time.  Forgot to take a picture.  The house is magnificent and they gave us the royal tour.  The pool and area around it were like out of a magazine.

 

 

 My scans in THREE weeks will tell if the drug is working.  This will be very telling for all of our endeavors, so it makes me even more nervous than usual. I am taking all the help I can get.  A woman I know that owns Seashore Healing Arts [yoga, reiki, massages, etc.] told us about a Buddhist monk,   Guyana Cealo.  He will be in Ocean City August 24 to 28.  He has a record of healings.  She is going to schedule me for 15 minutes.  Alan
motorcycled to Padre Pia today. But they weren't open to buy me a relic.

 

8-26-04

 Poor Alan twisted his ankle on the way out of his zoning board meeting at city hall, the other night. An eager beaver turned off the lights and he was thrust into the dark and missed a step.   It is so very swollen and multi-colored, he can hardly walk.  He didn't feel he needed a dr. - you men!  Yesterday though, so many people that we sit with on the beach that looked at it said to him that it looked bad so I got the primary on the cell phone [it was 3:30], he said to come over, gave us a script for the x-ray, I called the imaging center and they said we could come until 4:30.  We got there by 4:00 and by 4:10 the radiologists [one that reads my PET] came out and said nothing was broken.  Whew.

 

Today was the session with the Buddhist monk from Japan.  We sat with him for 15 minutes; we had a translator.  He told us several things, one of which was that 'the cancer is in the past and I should think of things I want to do in the future...'  He specified it must be things I do for myself and not other people. He held my neck, near the point of the surgery [it didn't hurt] and it was a blessings of sorts.  He had on this red robe [over one shoulder] and sat yoga-style on a gold trimmed fabric on the bed.  He had some words for Alan too.  ANd then he gave us some holy water to drink [ a tiny amount each day].

 

It was hard getting up 2 flights of steps to see him.  Because last night Alan twisted his ankle on the way out of his zoning board meeting.  It is so very swollen and multi-colored, he can hardly walk. He is pretty sure it isn't broken and doesn't want to go to the dr. but we will give it a day or so.  He needed a cane this morning but we don't have one; we used the rod from the Bissell-type vacuum.  So I don't know about going to the gym or getting on the beach. Definitely no motorcycle.

 

I know so well about not being able to wear a bra - my neck surgery preclude one because the straps hurt where the muscle was removed; then the radiation burnt the whole area so a bra was impossible; then I had a breast cyst and couldn't wear one; and the shingles came next across my back and front so again a bra was out; and finally we had the lung stitchery right where the bra would sit.

 

You are lucky Curel works externally; I need an 'internal' curel in my throat, trachea and esophagus.

 

8-29-04

It is still tres grand, and the colors are quite dark.  The ice should only be on 20 minutes of each hour.  we made it to the beach by Alan pushing our cart we use to haul the chairs on as a walker.  The tough part was the sand.  That is a task when you just get on the beach since it is so deep and soft.  Down by the water it is packed....  

 

Oh, yes - glad my appetite came back for it.  Tonight the builder that added on our patio invited us and his other customers to a dinner at a nearby country club.  It was really nice and we met people who live around the corner from us, that used him too.  We never saw them before yet we walk by their house and we sit on the same beach. It was so funny to see a room full of people who used this builder and everyone was smiling.  We have never talked to any other builder we ever had after the job was done.  In fact we had to sue one of them because over a 100 things were wrong. Loong story.  Anyway, getting back to the topic at hand, the food was delicious [prime rib among many choices] but for dessert everyone got their own individual chocolate cake. A little round job coated with chocolate icing ---a nice dense chocolaty mixture.

 

My appetite was good until this couple sat down next to us at the table [they held 10 people].  I lost appetite when man next to me talked into my food and spit and I felt it on my arm. I had half eaten my prime rib and he sat down, leaned close to me so he could talk to Alan on my other side and then his head lowered so it was almost on my plate.  His breath was so bad that right there I stopped eating. I got up to go get a coke at the bar; I should have picked something stronger.  Alan saw how it all played out and wanted to get me a new piece of meat but that was not necessary.

 

8-30-04

I told ALan if my scans in 2 weeks came out good, I have another idea for a fundraiser [when I said the word 'idea', you should have seen his face].  We'll see - but I'd have to check with my soap opera guys first to see if they are willing.

 

My cough is full time; it is odd ---lifesavers control it for a while.  Sometimes I can sleep thru the night - no rhyme or reason.  If I am in the car the and vent blows on me, it starts it up.  All indications are it is asthma related.  Outside, the blowing wind starts it up, too.  The inhaler isn't so good in that it dries up the back of my throat so much that I get a dry tickle - - - can't win. So I don't use it as often as they say.

 

We still managed to make it to the charity event Friday night at the Tropicana casino, even though his ankle was hughmongous.  It was for Gilda's House.  It was the dessert party and cast party from their Joy Behar and Robert Klein show.  They had chocolate fondue and crepes, my 2 favorites.  I stuffed myself silly.  There were other things too.

 

Alan did a search and quite a bit of research on Ester - C and Transfer Factor Plus.  We have to be so careful what I take.  Vitamins can also fuel cancer cells and we really would rather starve them.

 

Anyway, the main ingredient in this is not what you'd think by the name.  It is something that went around a few years ago called colostrum.  A woman was hawking it on the beach and it was almost like an Amway sales pitch.  And quite high pressure.  She would go over to one person and say it would help their depression and then you'd hear her at another group saying how it healed heart disease or cancer.

 

Obviously the product didn't do good under the colostrum label so now they have tons of it to get rid of and have re-named it and try to make it sound scientific.

 

It is made from bovine substrates and it is not regulated well so you can get contaminated supplies.  Was this woman in Delaware selling the supplement?  Just curious.

 

Thanks for the good wishes for Alan; it is just a matter of time till the rainbow of colors disappears and the swelling deflates. It doesn't look like a real foot.

 

9-5-04

Wait till you hear this. Word has it that this local g.i. doctor had a patient recently who died because the settings were changed on his instruments by his staff.  And they didn't tell him.  Maybe it was the polyp - burning apparatus.  The patient died after receiving more burns  than acceptable. I called this lady who is a friend of a friend of mine - she works at the conservative shuuuueeellll. I asked the name of the dr. This bitch says "I am not at liberty to say."  Seems the dr. belongs there. 

 

 Still what are the values of Judaism.  They should be service and helping others.  I told her I need a colonoscopy and don't want to go to him unwittingly and it could save my life to know.  There is no greater service than that.  She refused with another "I am not at liberty to say."  Major hypocrite, besides being a walking bastard. SO I got off quickly or I would have exploded at her but not before I said, "I will find out who it is, you can be sure."

 

At the dessert party, one lady said she heard of the story and knows the man who was killed by the dr.  She called today and shocked me with the doctor's name, JOEL KRACHMAN.  It is not said 'crackman' as then it would be a joke ---a g.i. dr. who looked in people's cracks [pardonnez-moi ici] called crack man.  It is said like 'kratch' - man.

 

I spoke to the original person today that told me about this dr.  SO I said I don't appreciate it when women our age play teenager games and of course I was referring to her friend who I called to find out the name of this jerk dr.  She said, "she'll lose her job." 

 

I said she already told you and didn't say not to say anything and when you told me you didn't say not to pass it on. Then I pulled out my trump card.  Whatever that means since I don't play cards.  I said good Jews follow the values they have been taught.  And the main one is  service to others; and what greater service is there than saving the lives of others.  Your friend Ethel [this immature merde professes to be the perfect conservative ] could have done that by passing on the name. 

 

The fireworks were lovely but we had to move back from Atlantic [sparks were landing on our skin, roofs, cars, etc.  My lemon meringue pie is my grandmother's recipe and I make it once in a blue moon.

 

9-7-04

The thinning of hair I can relate to.  I find 60 on my pillow most mornings. Some of my drs. say it could be the need to better regulate my thyroid hormone. They burnt my thyroid with the radiation.

 

 My next scans are September 14th and we will see if the new drug is working.  This will be very telling for all of our endeavors, so it makes me even more nervous than usual. Think of me on September 14th, if you have time.

 

So welcome to my world of the last 2 and a half years.  Getting a disease like this you have to expect to spend most days handling the paper work.


SO the g.i. murderer story is now corroborated; I heard it from 2 sources.  The poor man went in for a check up and was killed.  Terrible.

 

And here is the coup of coups ---I stopped at the police station today and the captain I know was back and said that Constantini was arrested on domestic abuse [he beat up a wife].  Well now the plot thickens.  If the wife wanted, a member of the domestic violence team was called to counsel her.  I will find out Thursday night at our monthly meeting.  Would it be too much if one of the team spoke to her and reported the details.  That is what we do at our meetings; discuss the various cases.  

 

9-8-04

And Constantini is sinking lower and lower until he goes off the screen.  I heard a story yesterday of an older neighbor who couldn't breathe and she went to the closest pulmonologist's office.  You get only one guess,    Anyway, a story on the recent episode, someone told me,  appeared in the daily newspaper so now I am trying to track that down. An article ---short, but nevertheless, an article.  He must be cringing in his short pants. 

 

The girls at the window were horrible to her.  They said she could have an appointment in a month. Ann said, "I can't breathe now: forget it!" And walked out.

 

9-9-04

Thanks for offering the seal to me; Maybe it will be more potent than the last one, which I can surely use. Especially Tuesday, for the dreaded scans...you can carry it for me Tuesday since I won't have it by then. These are major scans.

  

9-10-04

As it approaches, I am more nervous as to what the results will be.  Monday is the prep all day and Monday night I have to drink a bottle of barium.  And another one on Tuesday morning - another whole bottle of the white chalk.   I sneak some chocolate syrup in it!  Then the radioactive injection an hour later.  What a cocktail running thru my body.  I am afraid to lay on my back under the scanner a half hour because of this continuous tickle and cough; I can't control it.  I don't know what to do anymore.

 

  I just knew that if I didn't take on these battles, then there was no need for me to be kept here and part of the master web. The thymic is the same;  the Foundation wouldn't have been born if this weren't so rare. Alan does most of the work for that.  He is a treasure. And he keeps my spirits high......

 

9-11-04

We don't do well with the drive  since we have herniated disks too.  Each trek up and back aggravates one of us each time and the next morning we can't even straighten up.

 

Well, we are born naked, wet and hungry, and get slapped on our ass...Then things get worse. Someone sent me that and how true it is.  None of us choose these ordeals along the way.

 

Lulls are wonderful now.  Boring is great.  We yearn for that.   It is something what we learn to cherish.  Too bad we didn't know all this in our 20's and 30's.

 

9-12-04

If only this drug is working.  I won't care about the side affects.  I still can't comb it and it is still falling out - the thyroid medicine is unbalanced again from the new drug and that drug also causes hair to fall out.  I am not sure how far this will go.  I use a pick to 'arrange' it off my face. Carefully, holding near the root.  One morning I decided to count the hairs on my pillow case.  I quit at 60. 

 

Thank you for the wishes for the cough [last night it woke me and after choking awhile and plying myself with drugs, I fell asleep].  I hate nights like that. But maybe your envisioning and wishes will start to help.  Please.

 

 I give the doctor's  at the imaging center and the phone numbers of all my drs. to see if they can get out a preliminary reading. We are holding our breath and we get paralyzed to do anything [for days] until we know what we are dealing with.  For example, I wanted to go to the beauty supply store to get some hair products and I just can't do it.  I figure 'what's the use' in case . . . well it's been this way with each scan now for 3 years.  We need some good news and hope it is tomorrow.

 

9-12-04

I was at my monthly meeting for the domestic violence team I am on with the local police departments. By the way, the news flash is that awful pulmonologist was arrested for domestic violence [assaulted his wife -  stinking coward].  Pays to be on the inside - I get all the stories. 

 

The work with the Foundation is daily; people are contacting us at an increased frequency. Such sad stories - it scares me so I don't read them most of the time.  Alan wants to try to apply for some type of grant.   I suppose we have built up the Foundation from a multitude of experiences we had in our various jobs.  It has been rewarding so that makes us want to do so much more.  Did you get to go on the Forum that Alan created.  The thymic patients get on daily and exchange stories.

  The people we hear from that have this are the kindest souls.  One man just wrote in that he has thymic cancer in San Francisco and another lady [the wife of a thymic cancer patient] wrote to him on the forum and said she lives in San Francisco and would be happy to bring him food, etc.

 

9-13-04

  Today, I spoke to one of the owners of the imaging center to be sure there are no problems with the staff
tomorrow and while I was talking to him, the phone rang and it was Dr. Check's office.  They check up on me and are wonderful.  They wanted to wish me well and find out when the results would be out.  I gave them a bunch of
numbers to call to get the results soon!

As soon as I hung up, Cameron Mathison called.  I was bowled over.  In the background were TV studio sounds and commands.  He was at ABC and about to go on the "View."  Parents magazine was doing a segment on making your home safe for little kids.  They used Cameron's new home as an example.  He wanted Alan to put the segment on his website.  When it is done I will send it to you to see.

9-14-04

Well you won't like the sound of this.     We received a call from the dr. and he told us he got a preliminary verbal report; it wasn't great.  There is an increase in size of some tumors and an increase in cancer activity [shown by brightness on the radiologist's screen].  And there is one new tumor. We are very upset over this.  Monday we head up to Hahneman and University of PA. to see the oncologists in Philadelphia.   The expert in Indiana said they could call him.  He called, quite coincidentally,  the day we got the results.  He said to have our doctors call him and if there is anything he can do to help he will. The drs. here will fax him my reports so we don't have to go out there yet.

 

The dr. administering this drug feels maybe I need more time on it plus I need to take another drug he looked into - again experimental [by Imclone].  We'll listen to the docs on Monday and make a decision. It will be very confusing because each suggests a different path.  When I start to get down, I think that at least the drs. keep coming up with ideas ---a year ago, there was nothing.

 

We'll listen to the docs on Monday and make a decision. It will be very confusing because each suggests a different path.   It was such a disappointment that my body couldn't have given us a better report the first time out.  Julia and our support system have been providing constant encouragement  so again we pick ourselves up, dust ourselves off, and get ready to go into the ring again to kill the beast.  Never mind it is too stupid not to know that the beast shouldn't kill its host.

  

Since the news today we are wondering if the tumors are growing on my vocal cords; I am so hoarse lately.  Then again it can be the wrong dose of synthroid. I wish.    I am really frightened now. These bastards have a hold in a vital area and I am afraid they will eat it away. I never really envisioned what they were doing before. Some are near the esophagus, some near the bronchi.

 

Details of the day ------ the CT scan was fine [a very terrific tech; the PET was the worst I ever had so that doesn't make it easy for me to face the next one.  This tech, Theresa,  put on sterile gloves to inject me and then wiped my arm with alcohol so my skin was clean.  Then she turned around and touched other objects on her tray that were not sterilized and came back to my arm and touched the area that was to be injected.  This cross contaminated the items she previously touched to my skin that now had an open wound.  I tried not to show how livid I was.

 

After the practitioner puts on the gloves, all they should touch is the patient's site and sterile objects.  If they must touch another non-sterile item - for example a pen or a cart - then before touching the patient again, the gloves should be changed.  I realize many techs think the gloves are for their protection but they must learn that they are for the patient's protection also.

 

Another breach in sterility was she ripped off 2 sterile strips of tape to cover my wound and then placed them on her cart handle, an object loaded with bacteria, from the many hands that push it.  Then she proceeded to put those strips on my skin, containing the microbes from the handle.  This made a nice sandwich of the microbes between my skin and the tape.  She never learned some people are sensitive to  a variety of substances, microbes included.  You could get a staph infection that way.

 

I used to teach this very subject to the seniors I had in high school and college; and also patient rights [ha ha - a lot of good it does me now].

 

A major problem was she took the infusion set out of my arm immediately, when I needed a CAT scan with contrast after the PET.  The other techs always left the needle in .  SO I had to be stuck again, which should never happen and the tech should be very careful that she does not suffer the patient to do this.  I had to be stuck in the same arm, giving it unnecessary trauma.  My left arm was on the side where I had lymph nodes removed and had blood clots during my first surgery.  To be stuck twice in such a short time on the other side is trauma to that arm also since surgery was involved on that side too.  Keeping the blood vessels free from extra trauma can be life-saving to a patient.  How does one explain that to someone so young as Theresa.

 

The day before the scan I talked to the dr. we know that owns the center and we understood that Alan could not sit in the room with me after I was injected.  I am confused still, as to why that is their policy.  Fox Chase Cancer Center allowed him to sit with me - it allows my friend to even leave and go to her office and then come back for her PET scan.  The new imaging facility in the next township over, Galloway,  that has a PET scanner allowed a friend to have his spouse in the room also.  They all seem to be using the same contrast media.

 

We understood Alan could come into the room as I was scanned in case I had a choking emergency.  Last time he sat there with water and an eye dropper.  We understood when Dr. Brezel said he couldn't accompany me in the CAT room.  But Theresa contradicted Dr. Brezel and said Alan could not be in the room, reciting statistics that we never heard from anyone before.  Of course we are looking for information to confirm or deny [most probably] those statistics.  I have others on the case.  As you 'd guess!

 

I asked her to call Dr. Brezel.  She said she did and he agreed with her; I doubt she called since she returned too fast.  I'll check this out too.

 

 The final assault from this person with a complete lack of compassion was the Velcro wrap they put around you to strap you onto the metal table was tied so tight that after 15 minutes my right fingers were getting numb, and then my arm followed.  All together this was the worst PET scan I ever had. I hope you never have to endure anything like this.

 

9-16-04

I know what you are feeling.  My neck is the same; some days it feels like I just finished the radiation it is so sore.

It is a very confusing report; I am trying to compare with the last one but each time they use different terminology.

One dr. says there is a monoclonal antibody made at Imclone that has been used in some cancers.  We just learned insurance will NOT cover it and it costs $12000.00 a month.  We have no idea where to get that money - we'd need a minimum of 2 months to try it. But Alan wants to see if this is the best way to go - we have no time to waste if there is something else that may have been used for thymic and may work [unfortunately it is all the toxic chemos].

I don't want to have anymore PET scans. 

9-17-04

The news got worse when the final report came from the radiologist; the  new tumor is in my left lung now. And there is a small chain of tumors on the trachea which might explain my coughing and speaking problems.  We hope we can find someone to make sense of all this. ANd dictate the correct treatment.  I don't know if this means surgery again or systemic treatment.  I am very frightened. There aren't words to explain how the world stops each time we get these scans.

 

 It means so much to us that you care. All the prayers will help and knowing we have them makes this a little easier.

9-17-04

And you and your mother are so thoughtful and compassionate to keep visualizing,  sending me the aura and prayers.  I know when people send them because suddenly I feel more optimistic and less depressed. The first week after the bad news of the scans is the worst - so much has to be digested and learned at once.

 

These al quaeda cells have to be killed.  I try to visualize my immune system sending out the good cells to engulf them.  And I do try to let go of the negative and evil people I have met. One tape we have says to put them in a bubble and float them away.  Ne'er to return.  We're terrified right now. 

9-18-04

Thank you for the compliments - we know a few people with cancer and they all do the same.  They are very good role models.  It is getting harder and harder each time we get these results, but this is the worst.  I feel like the walls are closing in on us and it is hard not to get beaten into the ground.  Over a month ago, I had had a recurrence of my trigeminal neuralgia [terrible face pain].  The standard treatment is to take neurotin [large doses].  DO you think this could slow down my immune system so much that it isn't responding like it should.

9-19-04

 

Depending what protocol they decide for me in Phila. tomorrow, depends if I'll have free time or feel well for other activities.

 

9-20-04

Everyone prays they find the miracle to beat these bastards.  I pray that you and your family never have to have a week like this.  Today we went from dr. to dr., most of the time is spent sitting in the waiting room.  Each time it was an hour and a half. What you see as you sit there is not a good sight.  It is too sad to see so many very sick people.   If it were any other dr. for any other situation, of course after 1/2 an hour, we'd leave.  But literally, my life depended on seeing these 2 experts.  We were held hostage until they saw us.

 

It is such a scourge that beats all other diseases in that it is stubborn and can keep coming back.  The treatments are 3 types of torture  - cut, burn or poison.  Or all three. So barbaric.

 

 Dr. Luther Brady has decades of experience and is respected around the world.  If you look him up on the internet, it is 100's of pages. He is a radiation oncologist and has a different route [at Hahneman] than Dr. Evans has [at HUP]. Dr. Brady wants me to come back next week for a morning infusion of a radioactive monoclonal antibody.  Supposedly this goes after the cancer cells and leaves the healthy cells alone.  Sounds too good to be true and of course it hasn't been tried on thymic cancer. Dr. Check wanted me to do the same but with a monoclonal antibody from Imclone [at $12000.00 a month -  not covered by insurance].  Hahneman's is the same,  in theory,  and IS covered by insurance.  I'd go 3 weeks in a row to be infused each time.

 

At HUP she wants me to start traditional chemo - bad side affects, like heart damage, liver problems, bladder bleeding ---nothing minor.  Then you lose your hair [eyebrows, lashes, all over the body].  There is all for only a 50% chance that it would decrease the tumors in size somewhat.  The other problem  is it is NOT a cure - only to stem the tide of its growth. Thymic cancer is fatal unless they find the right treatment.  As soon as you finish a 24 week cycle, the tumors may start to grow if you stop the chemo.  So then you go back on it again.  She thinks my vocal cords are being paralyzed by the tumors pressing.  Now I need to see an ENT to see if he can do a procedure to help stop this. It is too much too think of all these visits day after day.

 

  As Lucille told me a few weeks ago, she is going to die without hair.  She is in the same predicament.  The cancer spread from her bones to her spine now to her liver and now she is on  chemo EACH week and her hair is falling out.  Her daughter's wedding is next week.  I can see how it is so hard to hear people say 'oh, it doesn't matter if you don't have hair.'  She will be on chemo forever unless someone invents the cure.

 

It doesn't get any better......just worse and you have to be realistic or else the let-downs get too hard to bare.

 

9-21-04

Thank you so much for calling. You have become so dear to us.  I was going to call you back today but my voice was too ''bill Clinton-ish.'' 

I am a little slow at answering email these days. For a week or so after these scans, I always go into a depressed mode. And on top of it all, 2 patients that we have met thru the Foundation website have been deteriorating with their thymic cancer.  And we heard they just died.  One man was 37.

 

Those scans are never going to be the news we want, it seems. We want to hear that I am cancer free and I will NEVER have to have another test of any kind to see if there has been a re-occurrence. That's what  we want. It may not realistic.

 

But, we also know that cancer is not the end of the world, it is a major disruption in our lives. We resent it. We become jealous of everybody who gets up in the morning and goes about their day the way we went about ours for so many years. But, it's not the end of the world even though for that week after the scans it seems that way.

 We are so pleased we could start the Foundation and never had any idea we could have such a positive influence on so many. The spouses of the 2 that just died said how much the patients needed the support of others that have this.

 

Because of cancer, we have discovered how many friends we have who really care about us. They pray for us every day. I can't let them down.

 

9-22-04

Our favorite 'temple' is Temple Sur Mer ---to sit by the ocean; if God isn't there, then she isn't anywhere.

 

9-23-04

This is so not a game but they give us the choice of choosing door number
one, door number 2, or door number 3. Your prayer for clarity is a the one
we need.  I am choosing to go from less toxic to toxic.   Chemo scares the
hell out of me. Two more thymic patients died and they were on the same
protocol they want to put me on!

 

Another door number  is to do nothing.  I'll start with the monoclonal. Maybe this will be the one!!!!!!   Just a treatment that if I have the protein on my tumors, they hope the antibody would attack those cells and will slow the growth.    Going from less toxic to toxic.   I may be able to try Iressa in between  but it  has many side affects and some serious.


Thanks for writing and your support.  I feel like you - I have been given miracles already, the chance to try some drugs that weren't available before.   The one thing I have found to be common  about this thymic cancer is that nothing is common.  Everyone is different, so it is really just a coin toss for the drs.  So I have been avoiding this for 3 years and it pushes my bravery to the limits.

 

Wow, do I hate cancer!

 

9-24-04

Here is a strange thing - I am noticing I cough more in the house than out.  We don't see any mold. We don't smell anything.  We don't know where to look for what.  I said to Alan I cough so hard in here that maybe it inflamed my lymph glands.  Mmm?  Denial?

 

9-25-04

The prayers are helping; other options have been explained to us and we found a path to be on for a few weeks.  Chemo is what the oncologist at HUP wants to start but it scares the hell out of me.

 

But my first choice of treatment is Dr. Brady [A GUARDIAN ANGEL].  It is the same as Imclone's but better due to the internal radiation.

 

  It is the very back of my throat where the problem starts. Way back - it never healed.

 

9-26-04

Well, did I tell you we are starting to edit 'my story' that I have been keeping on this since day one.  Alan put it on:

 

www.thebarbie.us

 

We hope it will help the other patients; they ask me a lot of questions so this way I won't have to repeat whole sections.

 

We were invited to Sandy's house, the lady who lives on the beach, for break the fast.  Did I tell you that last year I introduced your father to her on the beach [he wasn't interested].  She loves my challah so I made one plus a chocolate whipped cream cake [made with the Barry's cocoa}.  That was a hit.  It was a nice evening; the ocean was visible from the light of the moon.  You could hear the waves crashing.  

 

Sandy's brother started out poor, living in Camden. He became an attorney and ended up buying the Kinney garages.  He parleyed that money into buying sports teams, like the N.J. Nets and put some into the Yankees and N.J. Devils.

  

Last night I slept the whole night and didn't cough and not much this morning.  We turned on some computers later and I start hacking.

 

9-28-04

Today I had my major dance - a prom of sorts.  We are holding off the chemo yet one more time [I am the biggest chicken].   It is the most toxic of the choices.  The side affects are just horrific in themselves yet they'd have to be to kill cancer cells. I am going to go from less toxic to toxic, if the drs. say I have the time.   Today I had the first infusion of 3 infusions of the radioactive monoclonal antibody. We came up to Hahneman and will be there next week and the week following that.  If you want to keep me company.

 

  It was tough - the nurse missed my veins 3 times.  This has never happened before; not at A.M.I. [the imaging center when they do the PET and CT's]  or any of the hundreds of times I've had blood taken in the last years.  I told her to stop fishing around and get the needle out and get an expert. It was agony.  And she had the tourniquet for the wrist fiasco up at my shoulder.  Which is wrong, wrong, wrong. I used to teach how to take blood - for 25 years.     The dr. had no problem finding the vein [you'd need to be blind to miss it].  Then they brought the injection in a lead container and it was dripped into my vein.

 

 After that, they explained that I have to stay 3 feet from everyone for 3 days since I am radioactive.  To prove it, they ran a Geiger counter over me.  The dr. was the control.  Not a beep for him; it went wild for me. ANd I can't prepare our food or have Alan touch me [or hold hands].  Boo hoo.  ANd I have to stay away from little kids [my sister wants me to come to her kindergarten class and hug each one ---they are very very bad this year].  

 

 Now this treatment has got to work.  I am trying all sorts of mental imaging [yours and the dr. gave me some].  I hope something else kills me first so the blood sucking cancer doesn't get the satisfaction of killing its host.

 

The dr. [Luther Brady] said his antibody is the same as Imclone's, only better, because it delivers the internal radioactivity.  The price is much much less.  Incredible.

 

The insurance company said they won't cover Dr. Check's drug because it is not approved for thymic cancer.  WELL, NOTHING IS APPROVED FOR THYMIC CANCER.  They have done NO studies or trials on thymic cancer and don't know what works or doesn't.  It has been ignored for a century.  The tech at Dr. Checks said I should appeal it.  I did and they denied it.  I'd have to put in a 2nd appeal.  It is just so exhausting to prepare this stuff and the insurance companies know it and count on sick people not fighting back.  Another drug we want to try if the infusion doesn't work is also not going to be paid for [the HUP oncologist already told us - it will be a  few thousand a month].  You really can't prepare your finances for an illness like this.  Unless you save every red cent as it comes in.  We never thought.

 

 I have not seen an ENT  yet.  I am just so fatigued from visits, tests, infusions, fighting on the phone with insurances,  that I have no time on my dance card left.  Tomorrow I have a cardiology appointment, made months ago, for an echocardiogram [it shows if my heart can take the adriamycin chemo].  And I definitely do not want every day of the week to center around cancer for Alan.  We need vacations from it. Eventually, when I can think straight, I'll make an appointment.  When you get this, you have to work round the clock on it to beat it. But you need to clear your head too, once in a while.  Some appointments have to take a back seat.

 

Thanks for the kind words; and pep talk.  Now I can understand why it is not necessarily a good thing to know where and when and how we will die.  Just having a disease like this fills in some of the data, unwanted as it may be.

 

The dr. at the teaching institution said his antibody is the same as Imclone's, only better, because it delivers the internal radioactivity. 

 

You said, what I feel. Exactly!   I also always say I want something else to kill me & quickly.  I hope something else kills me first so the blood sucking cancer doesn't get the satisfaction of killing its host. Where is that heart attack the cardiologists promised me anyway?  For 30 years now - eat no cholesterol and low fat they'd say.  Your cholesterol is so high we need to put you on large doses of drugs, they'd yell.  I refused.  They said they didn't want any part of me then.  So I didn't take their drugs and I am still among the living - 429 mg. of cholesterol and all. 

 

You may have a very good point about the survival of the fittest and cancer is a way to control the rising numbers.

 

10-3-04

The raspy voice just doesn't make it easy to converse these days. It is more frightening than anything else because we wonder what it all means. 

 

10-4-04

  I am directing so much energy and thoughts to trying to effect a miracle.  The problem with this particular type of cancer is no research has been done on it and what they have tried on others and myself, doesn't work.  It is a tough cell type to kill. We have to find 'its' weak point - and give these little bastards a trip to hell.  I have fought lesser enemies myself [non-medical foes] and though this time, I have the best experts to be generals, 'it' is a formidable enemy.

 

As for the radioimmune therapy side effects, he didn't think I'd have many but I do have some this week.  My eye white turned blood red, I have these heat sensations in my body [which I hope are the bastard cells frying], and my cough is a little worse at times.  LOHH is very bad.

 

You must know that I know about jumping when the phone rings from the dr.   That is why scan time is the worst time of our lives, and imagine if every time they called it was consistently bad news.  You get programmed.  Let me know when you know.

 

10-5-04

That is incredibly sad and frightening.  Your strength is admirable even though, we know more than many, how sometimes it seems impossible to carry on. 

 

As people tell me, miracles can happen and Drs. are NOT God so he really shouldn't be quoting statistics there. It takes away hope and that is the one thing you should have.

 

No dr. has ever given me a time frame or prognosis [by all standards, I shouldn't have made it 3 years already].  It always seems so bleak for a few weeks when the news hits.  That is how Alan and I have been since Sept. 14th.  But as we emerge from that now, we see that cancer has become a chronic disease in most people.  You go from treatment to treatment and hope they finally discover the magic bullet.

 

So emerge from the abyss with your boxing gloves on.

 

10-6-04

It is a tough cell type to kill. We have to find 'its' weak point - and give these little bastards a trip to hell.

 

The Rabbi called me the other day.  I played "stump the rabbi."  I asked him how we get our bodies back to the pre-cancer mode.  We all know 20 years ago none of us had this merde.  SO how do we get our biochemistry to revert back to that time.  There isn't much he can't answer but I got silence on the other end.  Maybe he'll have a consult with some other colleagues on our behalf.

 

 I only want this to work.  The radiation oncologist said if he sees any improvement on the next scans they can give me a 2nd set of infusions to knock the little coward bastards further on their derrieres.

 

I go for the 2nd treatment  tomorrow.  Then I am a biohazard again for 3-4 days. 

 

You can feel free to start reading Thebarbie now - a little at a time is all one could take - take valium first! A psycho therapist I know said if it were a book, no one would buy it since it is a downer.  But I don't look at it this way - I am still here to annoy the hell out of my enemies, so that is good!  

 

10-10-04

The 2nd infusion treatment  went okay [afterwards I spurted blood from my arm like Bernadette of Lourdes] - we don't know what the nurse did wrong [same one who had trouble finding the vein last time so we didn't let her touch me until the end and then this happened - she must be the devil].  Nope - never lost blood before and it should never happen in any infusion treatment. And that is that!  She is incompetent.

 

Whatever - just let these treatments work. And with your vibes and visualizing auras, I only stand to have a better chance.  I just got a fortune cookie with a good omen "you will have good health"  - - -  your prayers are watching over me.

 

So we  try to be filled with the hope that the new drug may do something to slow down the growth of these out-of-hand cells. 

 

The paper said you are radioactive about a week; the percentage goes down a bit each day.  By the 3rd day you still are 25% radioactive

 

Didn't watch the debate - we tape comedies and that is all I want to view [......or was it a comedy]. 

 

 When we get back from the infusion, I had to stop in at the cardiologist's office in Somers Point for a carotid Doppler  ultrasound.  In case I need the super toxic chemo, they are checking out my heart.

 

Last night Dr. Check and his girlfriend came to see the Borgata Casino and we met them there for dinner.   He couldn't get over how I looked [he thought good] and my energy level.  He said if it weren't for the scans, he'd never think I have cancer.  He's trying to figure out if the spots on the scans could be from anything else; we kept hashing it out but so many experts have read them.I only wish there was another answer.