April 18 to June 16, 2005

 

4-18-05

After 2 more sessions, I will have had 4 weeks of radiation; then next week, I will have a PET/CT scan.  May it show we gave the 'stupid criminals'  the death penalty,  and this  will all be worth it. 

 Those protein milkshakes are horrible tasting - I have 12 different kinds and can only get thru an inch a day.  The aftertaste is awful.  I still seem to be losing  a little bit of weight; it is either my body is  constantly  trying to repair the damage the rays cause to BOTH the cancer cells and the normal tissues or I am not eating quite my original volume of food.

 My skin is starting to get red, itch, and tiny little blisters are forming.  You remember from last time.   So time for a short break.  I didn't have a treatment today; they called and said the linear accelerator broke.  It has been acting up all week.  Believe you me, I was not broken-hearted not to be going over to the hospital.

  At times the cough does seem to ease up for short periods; they are using huge industrial air scrubbers during the removal. It is all very interesting [in a scientific way]. I had felt like the house was my enemy and now we are tolerating each other more.

 4-20-05

As for the dosage of radiation, we got many opinions. Some from experts on our board. No one said anything about a lifetime 'allotment.'  I think the concern is the area where you need the radiation.  It would be impossible to radiate my old area since it never healed and is wall to wall scar tissue.  Since I am being radiated in an area that is lower than before [with only a tiny overlap], they felt we could try it, CAUTIOUSLY [that is why I am getting a week off now].  Over and over the word 'careful' is being used with me.  There is a chance of so many permanent side effects but if we can kill the cancer cells, we felt we'd take the chance.

    I find that I can't exercise now without pains arising somewhere and they last longer than exercise muscle pains from before. And they are more severe.  So I am going to lay low and conserve my energy and let the immune system regroup.  I just can't push.

 It is good that the weather is warmer since we couldn't have the heat on while they were working in the crawlspace.  I get a lot of pleasure going over the Longport Bridge since the scenery is very uplifting.

  Well, until next week, when I will have a PET/CT scan first to see if there has been any damage from the rays, I am free from being rotisseraried daily.  I feel like a queen. Not to go over there every day. It will be nice to heal internally a little from this assault though one week is just a drop in the bucket.  It took 4 weeks to get this way so it would take at least that to start to feel some improvement.

 

4-22-05

Here is a funny story.  We had taped something on the vcr and the time or channel must have been changed and it wasn't on.  But instead we got the Paris Hilton show,  'the simple life,' which we'd never in a million years have watched. 

What caught our eye was it was filmed here in Longport [a few months ago] and in Margate, etc.  She lived with a family a few blocks from here so it was fun just to watch what went on.

 No humidifiers yet - can't find anyone to do it.  I seem to cough less and less violently. Except we have been trying to clean really good [wash drapes, vacuum walls and shades, etc.] and this has disturbed dust and mold so I must stay out of those rooms till it settles.  What a job.  We also need to have one heating duct cleaned of mold and the metalwork re-done.  Found a man to do it; just hasn't come out yet.

 

4-24-05

The radiation keeps working in you for months, I found out last time.  Just because you don't have a treatment doesn't mean the cells can recover that quickly and start growing.  The dosage is accumulative and does stay in the body for some time after.

 I can understand how you wouldn't tell her about you.  But in a way, maybe she'd improve herself by knowing - some people may hear the news and say, "boy am I lucky ---I shouldn't complain."  This is what some have said to me when they hear my tale.  They say that how can they complain about their backache or  filling in  a tooth to me.  I do sympathize but if my story can help someone enjoy life more, then that is a good thing.  Some people dwell on minutia daily...until something hits them square in the face.

 The dr. here knows what he is doing......and to be sure, you know we had it checked out by 2 other radiation oncologists [at Hahneman and Penn].  They all would follow the same protocol.  Which is aggressive for this type of cancer.  They push and push and can only go by your side effects - for when to stop the burning.  My skin is starting to get beet red, itch, and tiny little blisters are forming.   You went through this with me from last time [in 2002]  so probably remember the same thing happened.   So the radiation oncologist said it is time for a short break, to start with, at least a week away from the daily radiation sessions.  Besides the pains I have internally, this gives them the information they need to slow down. 

 Thursday I will have a PET/CT scan first to see if there has been any reduction in the tumors or if there has been any damage from the rays. It is very upsetting thinking of this - of course we hope for the best- that the tumors are responding but also that there are no new tumors.  They are worried about my neck which is intensely tight and where I feel a constant pressure [edema is what we can only pray for and not a new mass].  The tightness diminishes my voice, takes away my appetite [it is hard to swallow], and my head always feels heavy and lop-sided from the extra 'weight.'  It gets worse at night even though I try to keep it elevated, somehow I schlump down. It takes hours to 'wake' up.

 I also had tubes and tubes of blood drawn to see how I am doing internally. SO far...drum roll.. my cholesterol is DOWN TO 402.   The blood smear showed I had 80% neutrophils which was in the high range and only 10 lymphocytes which is the low range [should be more near 25 for the lymphs].  Something is happening but no explanation yet.

 Yes, we pray for edema - as always we pray for bizarre things, don't we - but that is because the alternative is not good.  Your theory on my neck being related to the mold is one for thinking about so I will ask the dr.  Very very thought provoking.

 Thursday will be a very telling day.   And nerve-wracking.  Waiting for test results. 

 De-molding is painstaking work. They have to scrape off the mold on every inch under the house and vacuum it up [it is only 3 feet high - the work is done on their backs].  Then they have to apply a solution to every inch [anti-fungal].  Now they have to paint the exterior walls under there with a special product.

 Thanks so much for the tips.  We checked the insurance policies - nothing in the 10 year state home warranty.  We tried the homeowners since it had a clause.  The agent said that unless something caused the mold, like an appliance breaking and water flooding out and making it wet and damp, it is not covered.  So as of now, we are stuck with the bill.

 And my dryer of only 6 years bit the dust.  Art Handlers here we come.  So we had to place an order for a new one.  We figured a service call and parts is half way there to a new one so we'll start fresh ---out with the Amana and in with a Whirlpool.

 Cancer treatment is worse than the disease.  Yes...look to the bright side.  I am trying.  The mind is a complicated thing so you can't always do what you want- the brain pulls you in many directions.  People like us that are analytical, have been educated our whole lives to think things out and see all sides, so that is what my mind does daily.

 As for your question about the 'radiation burn' - they TRY not to let it get to the sun poisoning stage.  But sometimes it happens suddenly and also remember it is happening INSIDE the body where they can't see the red and peeling and blisters.  So they go by the pains I have internally; this gives them the information they need to slow down.  When I swallow cold or hot now, I get a burn in my chest - it is lower down than last time, but nevertheless, it is there and painful. Plus all the other problems I already told you about.

 

4-26-05

The PET scan is based on glucose metabolism.  When cells metabolize fast, they need glucose.  SO they inject you with radioactive glucose and it tends to go to cells metabolizing fast [cancer cells].  They light up!  That is why I chant, "Hell no, I will not glow."  I don't want any area lighting up.  Of course there are false positives - inflammation, infections...all have highly metabolic cells.  The CT is more of anatomy of the area - not a cancer map.  One modality helps explain the other therefore.

 Like you I need fluid to get down my food - my throat is so dry so food sticks if it isn't helped.

 

4-28-05

As always, you would not believe it.  The scans are trauma enough for me.  Today, going to the imaging center I went to in Dec.,  was double trauma. 

 Do you remember that story. I prepped for the PET and CT scan and as we were leaving the house, Shore Radiology called and said the machine isn't working.  Besides the emotional stress behind further delay of finding out how I REALLY am, we had all the oncology appointments [some difficult to obtain] set up based on getting this report tomorrow.

 Plus physically, all the water I had to drink, no caffeine [chocolate], no exercise, AND LOTS OF COUGH SYRUP, etc.   

  After 3 days they hadn't fixed the instrument.   Meanwhile I am finding out the place forgot to pre certify it and one nuclear tech was absent.  We checked with our insurance company and they think it a poor idea to go even if I have an appointment since they did not pre certify it.  They wonder if that is a convenient excuse to look good to the patient.   I was so ill from all the RX's I took so I'd be able to withstand   the test, i.e., laying on my back for such a prolonged time.   My voice was totally out  from too much codeine .

 So my radiation oncologist wanted me to give it another try - he has a system to get a disk from them immediately, etc.  I told him how I don't want to reward them for horrible service.  He begged so I said ONE MORE TRY.

 Did not start out good - went for test and the pharmaceutical company SENT AN EXPIRED DOSE to inject into me for the scans.  What liability they could have, right? Waiting for the proper vial now.  They'll call and then we'll go back over.

 We flew to the hospital afterwards and went to my dr.'s office and told him this.  He was livid, called the center, and put the owner on the line to Alan and I.  As a gesture of apology they will donate to the Foundation and so will the pharmaceutical company.

 

4-29-05

Alan and I are in a state of confusion and anguish.  Today we spoke to the rad. Onc. and he was kind of closed-mouth about the report.  He said the chest tumors - as told by the reading radiologist- were a bit smaller.  So that is good.

   But when I asked what it showed with my neck [ being so tight and swollen- he said he wants us to bring over the last year of PET scan films for him to look at and compare. He said to do this Monday.  He also is sending a message for yesterday's scans so he can look at them himself.  So we are in limbo.  We aren't sure what it means.

 

5-1-05

We passed over Passover - I am still losing weight [about 20-30 pounds total
now - it is very upsetting]. If I can get something down, I  can only eat
foods that are not dry so that leaves out matzo and matzo products.  So hope
God will forgive me this round.

 We did not go up for any dinners.  Unfortunately, the Moses are having THREE
dogs at theirs - I can't take a chance of the dander setting off an attack
after driving 2 hours.  My sister also asked but I do not want to sit at a
table with  Jeff Chesin [Stephen's brother].

 

5-3-05

The report also showed new tumors near the kidney - several in the abdominal area - and worst of all, a tumor in the thyroid and one in the neck near where the old surgery was.  We are investigating options but they are running out - there are all kinds of problems with cutting and radiating the same area again.

 Dr. Cassir wants to send me to see a head neck surgeon to help him evaluate what these are and what to do about it.   He wants to concur with the medical oncologist, read all the films again, etc.  He seemed at a loss, as we all are.

 The radiation is on hold for many reasons, mainly the skin has broken in an unbelievably red, raised, itchy and painful rash.  It has even appeared in the area which did not get radiation this time, but where I received it last time.   But they halted it.  It is like being kicked out of school.  It goes from shoulder to shoulder and front to back, like a cape. Cells can be smart when they want to be!  This is one thing I wish they didn't remember.

 We were praying that we'd have some peaceful times before ever reaching this step of the disease.

This starts a round of visits. We'll go up to Hahneman on Thursday to have the films read by a third opinion.

 I am trying to look to the bright side.  The mind is a complicated thing so you can't always do what you want- the brain pulls you in many directions. People like us that are analytical, have been educated our whole lives to think things out and see all sides, so that is what my mind does daily.  The positive plus the negative - it is the whole scientific method unfortunately.

 It was great seeing you and Neal.  It was a bright spot in the last week.
We both appreciate you making the effort to come - we know desserts are not
easy.  Mine didn't help me in the least---since Saturday I have lost 3 more
pounds.  Must be partly nerves.

 

5-4-05

We must thank you for helping alleviate a lot of the cough.  Now that the
mold remediation is complete, I cough less often and less violently. My
house is becoming my friend again.

 Tomorrow we go up to see Dr. Brady so he can read the films.  Probably I am in denial but I want him to say it is all a mistake.  Any tiny part of it all being a false positive, would bring more hope.

 I have asked about vaccines before - they don't do that for all cancers.  They are still in trials so you have to wait till the N.I. H. opens one you can qualify for.

 The neck is no better - it looks like one giant hive, like last time and it is so painful.  Maybe Dr. Brady can help there.

 And I lost another 3 pounds which makes me more nervous so then I lose my appetite more. Seems certain foods, more than before, are sticking in my throat.  I need lots of liquid to get them down.

 Our new dryer came yesterday - I told you the other one stopped heating.  Only 6 years old but it may have been a few hundred to fix so we got a new one with a new warranty. The old one put so much lint in the room and that of course was a coughing problem [the plumber that put it on made some errors, we just found out] so this new one may be a blessing.

  An ironic twist - the C.E.O. of Blue Cross died of cancer recently [40's].  And it is scary because he was at the top of  top and if he didn't know the best treatments, etc. what chance do we all have.

 We have so many similar problems. The acid reflux is something that seems to be common to patients like us [from all the work they did in that vicinity]. I am supposed to take prilosec daily [sometimes I skip it  -  too many pills to remember]. 

 

5-5-05

 Today we  took time to focus and  came up to Phila. and showed the images to Dr. Brady at Hahneman.  We value his opinion . Probably I am in denial but I wanted him to say it is all a mistake.  Any tiny part of it all being a false positive, would bring more hope -  he has a good eye for reading those films plus knows my body from the last 3 years. He is one of the Foundation's board members and a radiation oncologist extraordinaire. 

 He feels the PET /CT scan was too soon; at least 4 weeks are needed to reduce the chance of inflammations causing a false positive.  He wants me to repeat it in 4 weeks.  He wants me to just heal, rest and recuperate till then. He said what I wanted to hear but who knows if he is right or not; you don't know who to trust.  He doesn't think it wise to go poking in the neck, disturbing sensitive tissue, for biopsies.  He has a sense that maybe it may not be a mass but could be fluid because the drainage is bad from the lymph node removal.  He sees the kidney tumor and feels it is a cyst [contained on top of the kidney] and wouldn't do anything about that yet.   He thinks it may have been there all along but the images weren't picked up because of different angles taken each time they scan you.   Thank God, I don't have any problems or symptoms.

 He said what I wanted to hear but who knows  if that is really what is going on. Two drs. - two opinions.  Here's hoping for fluid.  The things we wish for......

 He reminded us that one of my scans after the first radiation in 2002 showed the thyroid lit up and we were all concerned then.  He said it could be part of the inflammatory response also. He is in his 70's I think, and reads these scans with a lifetime of experience so he was able to calm us down.  We want so much for him to be the right opinion.

  We got the name of Greg Weinstein head-neck surgeon at Penn, just in case; it would be a good idea to have the neck checked out

 Adam met us afterwards so that was uplifting to have lunch with him at the Four Seasons, so that was the high point of the week  We don't see him much anymore since he is about 80 miles away. Can't believe he is 28.  We dote on him, unbelievably.

 

5-8-05

Our only hope for the other 39 patients with this and myself, is through the Foundation.  From last years funds raised we now have 2 research projects underway in Ohio and Indiana.  No other research has ever been done on this type of cancer.  

 

5-9-05

The skin  is still agony but Alan found a cream yesterday when he took a motorcycle ride to Sea Isle City [we are supposed to check every thing out before you use it with the radiation oncology nurse but I was miserable].  It has green tea in it and shea butter and it is like a cool whip consistency.  It seems to take the flame out of the skin.  Every little degree less of discomfort is major.

 

5-9-05

 

Having the mold remediation done underneath our house has made a big improvement.  The coughing episodes are not as frequent or violent [ew - I hate to write this ].  But 'it' has calmed down considerably.  Or it was the radiation, shrinking the tumors away from the costophrnic nerve which controls coughing.   The pulmonologist at Penn,  by the way, was so right about how a cough begets more cough.  The less I cough now, the further apart the episodes get.  And I haven't needed sucking candy for days.  It is like a miracle. I'd never believe 'sick house syndrome' unless I experienced it. 

 Today was a cardiology checkup [the radiation caused palpitations].  He wants my thyroid medicine lowered possibly.  He thinks the weight loss and the fact that he found my heart rate constantly too high may be due to that RX. Interesting.  It'd be nice to gain weight again.  It is a lot of pressure to keep shoving food down my gullet.

 

5-10-05

 We are still sitting here waiting for Dr. Check to call to see if he can adjust my synthroid so I can gain some weight.  When I called his office to day to remind them to have him call, they said he has been so backed up that patients come, sit forever, and leave without seeing him.

 Today the radiation oncologist did not have much to say. For each question we had,  he suggested we go to the appropriate specialist.  He only can attest to his area that he radiated it seems.  SO we still have lots of questions

   We know we'd like to have a fundraiser again but could never duplicate the one we had last year [that took a year and a half to plan] ...unless suddenly my old energy came back.  SO for the time, we will auction off big items via the Foundation's website or eBay.

 

5-12-05

Dr. Check called last night is not changing my synthroid - he said it looks o.k.  He thinks the weight loss is the abdominal tumors affecting my absorption of food. Or masses on the thyroid spurring it on to a higher metabolism.  The surgeon leaned that way. He frightened us on his comments about the PET scan.

 MERDE.  Talk about things moving fast.  Please please keep chanting. Maybe it will bring a new treatment to us all.  We were told very horrible news today.

 Yesterday was frantic.  Thinking I’d be efficient, I figured I'd make the appointment with the head neck surgeon for a month from now, after the next scans.  It usually takes so long to see the specialists.

  The head neck surgeon needed and got my records from all the drs. at Penn [Kaiser the lung surgeon from 2 years ago, the pulmonologist and then the med. oncologist] and those recent records from here.  His administrator said he'd review them and decide if I should come in 4 weeks after the next scan or whether to come right away.    That set off my radar.

  Well, she called and said the dr. reviewed them and summoned me to see him tomorrow. We were hopeful that he didn't want us to come for a month until after the next scan but it is not working out that way.

  We were told very horrible news.

 We saw the head neck surgeon at Penn today regarding the activity in my neck. He examined it, felt a lump and did a needle biopsy. It was looked at right away [2 of them] by pathologists and cytotechs and they said it was "suspicious and most likely" cancer.  they said it was the return of the thymic cancer.   Hate that word.  


Weinstein said that it was "inoperable", that he wouldn't consider it for surgery because of how involved it seemed.  He did say that we could always get a second opinion from another surgeon, and we were wondering about going up to N.Y. - Memorial Sloane  Kettering. The one in the neck seems to be most critical because of its location and the problems I am having swallowing and moving my head.

  In the meantime,  my medical oncologist James Stevenson (Penn) and Pat Loehrer  are going to talk about a recommended chemo protocol.  I know you know that scared feeling.  just shaking...they are tearing us to pieces. They both are  away for the national oncology symposium held each year; we are sure the news medical reports will be blaring sensational new treatments after the weekend.  It happens every year.  Dr. Stevenson
said he will keep his eyes open for me!

 We are just trying to pick ourselves up and dust ourselves off today.  I am in denial and still am telling myself it could be scar tissue; can't own up to cancer in the neck again.  I guess my brain is in  a protective mode.

 Our friend Rich Moses is trying to see if Sloane is what would be good now.  His sister is an anesthesiologist there and has my records now [he faxed them to her today] and is 'shopping' them around to the various experts.

 It is a lot nerve-wracking to me to think of going up there [3 hours each way], strange hospital and city, and no one we know that would be there for support during a hospital stay, lives there.  We could also go to Johns Hopkins and see another expert.  Same fears.  It is 3 years ago all over again...we are devastated.   

 

We both appreciate you running by him my weirdness.  The more opinions the better when you are dealing with a cancer that no one has done any research on [except the Japanese but who can read their abstracts, right?].     From last years funds raised at the luncheon, we now have 2 research projects underway in Ohio and Indiana. Our only hope for the other 39 patients with this and myself, is more research.

 I am on fire.  The skin is as bad as 3 years ago. In the area which did not get radiation this time, he said they call that 'recall.'  It is sheer agony - the pain, burns, stinging, itch and it is frustrating as hell because 'they' give you this condition and have no treatment that works.

 she is 'shopping' them around to the various experts  in the multitude of departments up there. It is very compartmentalized, each dr. with their specialty.   NONE do thymic cancer by the way. NONE. NONE.  Not 3 years ago, not now.

 

5-14-05

The mold work is done and the dehumidifiers are in and working in the crawl space so hopefully that will prevent the mold from coming back. 

 

5-16-05

 What we both really need right now, if you know of someone, is a therapist that we can talk to about the really morbid issues we are facing right now.  Does Gilda's have any list or recommendations of professionals that deal with this.  Maybe someone who has a practice specializing in this. 

  Thanks so much.  If a miracle could happen and we get past this, you know we will be at future activities.

 

5-17-05

So far, and this is what happened last time,  the chief of surgery at Sloane told her that Dr. Weinstein at Penn, the one we saw last week,  is the best and if he can't operate, then they wouldn't attempt it.  They feel because the cancer has metastasized above and below the diaphragm, that the best approach is systemic.  Of course they don't say which one.  There is no one protocol known to work for this type of cancer.

 We can always try Hopkins soon. 

 It is just that  we have been so disappointed and on edge and I have been having panic spells and depression.  I feel the urgency to do something immediate and aggressive before these tumors impede any vital nerves or vessels.  My various side effects we now know are not benign reactions to radiation, etc.

  I am visualizing a lot, meditating, and trying to will myself well.  It is a tough job.

 I guess if you or I were the Pres. of the U.S. they'd have us treated and cured by now.

  Dr. Stevenson is between institutions now and couldn't begin at N.J.'s Cooper Hospital Cancer Center until June and I feel it is imperative to start now.  It is an innate feeling I have.  They think Alimta would be the chemo of choice.  Dr. Loehrer is using this on several thymic patients.  Unless we hear anything new between now and then that is what we'll try.  We don't think there is anything earthshattering or a definite but we go on hope. And pray that the tumors I have  will respond.      Alan has read ALL the studies and articles. 

 So Dr. S. had a good idea ---and this is why it is so important to have a host of drs.  He said  I should go to the local medical onc. here at the shore, Dr. Hollander,who will start the B12 and folic acid in preparation for the ALimta infusion. You need a week to prepare for the first treatment. 

 Then we heard from my first surgeon who moved out of Phila., Temple, and is in md. And he said the same. He feels that since the cancer spread above and below the diaphragm, only chemo is an option . He said any more neck surgery could leave me in a poor condition [the nerves cut could hinder my quality of life, ditto for the muscles , and the voice box and trachea could be affected.

  My dr.  also just returned from the international oncology Symposium in Orlando. They did not find out anything new down there that could help.

 The local dr. gave me the B12 shot today [wasn't bad in comparison to other merde I had], started me on other vitamins the Alimta interferes with, and gave me a host of prescriptions that I need to use first.  One is a steroid [the one you are on-so tell me what it does to you] to minimize a rash and allergy to the drug.  Another is a drug for the mouth and throat because it causes painful sores.  Like I am already eating enough, I need another reason not to want to put food in my mouth.

 The infusion is set for next Wed. morning in her Galloway office.  A week has to elapse before the 1st infusion.

 

5-18-05

A friend just wrote me:

  Keep on truckin'!  Think of all those cases of remission, spontaneous or otherwise, that the doctors had given up for lost.  The naysayers were wrong.  And the naysayers will be wrong again!!!!!!

The pressure from the tumors does impede my eating but I am trying very hard. Pasta slides down nicely.

  I have no idea what God has in store for us but we are at God's mercy and I pray he will be compassionate to us and show mercy to us.

 

5-19-05

This is a story out of the bible - well they say history repeats itself.  The pharaoh expected the Jews to keep building those pyramids but took away all the building blocks, one by one.

 Well I am expected to fight this cancer but 'they' have taken away 2 of the  methods - cutting and burning.  Seems I've had my limit.

 What can we say.  People are at a total loss of words - this came in tonight from s.'s cousin to me:

 And yet, you’re still here! You’re still alive and there are so many people who get to continue to enjoy you – like me! I’m so grateful for you and our friendship. Thank you for coming into my life. you are wonderful.

 

5-20-05

I am honored to still be here - that goes without saying.  Sometimes, though, you can't help but feel beaten down [that damn Punch and Judy show] and wonder how much you can take and when you know enough is enough.

 Again, we so appreciate the newsy emails - especially helpful [and so many people don't ever understand this part because they haven't lived it], that when we write the story, it is so much easier on our emotions than when we each listen to the other tell it over and over on the phone.  It hurts each time one of us tells someone the recent news and the pain it brings each and every time doesn't help us deal with this.  I wish more people would use email in times like this.

We are not sure if insurance will pay for it but we can not think about that now - it is about $4000.00 per infusion.  There comes a time when you don't consider - you just do.  If denied we will appeal it, get a lawyer, whatever.  For now, we just need to get it in me.

  Pat Loehrer in Indiana,who is actually doing the Alimta study,   however,  suggests I start with the stronger cisplatin regime and   then try  Alimta if that didn't work. So it is a question on what to choose.  And quality of life comes into play.  By that we mean the side affects from the drug are very strong.  2 thymic patients are on cisplatin now and in the hospital - one got pneumonia   and the other blood poisoning from it.

  But Dr. Stevenson said, among his other reasons,  since I am still healing from radiation, he didn't want to start that toxicity level right now. There are a few problem areas left since the recent frying.

 He also witnessed my terrible reaction to the Gleevec for 2 months.  He suggested we  give me 2 cycles of Alimta [which is no walk in the park whatsoever] and get a scan and see if it is doing what we want it to.  If not, we go onto heavy metals. 

 He even suggested the possibility of a vaccine in the future.  I like that word, as if I have one - last weekend I strongly doubted it.

 

5-21-05

You give me so much - mainly  your always positive attitude .   Lately I waver.  This week and last were  just so trying to emotionally get in balance.  It  has been impossible; the head neck dr. took  a lot away from me .  Mainly there was my little corner of the brain where I live in denial sometimes and also the hope that all these spots are artifacts on the scans.

 

5-23-05

 

Thank you so much -  the prayers mean more to us than we can say.  It is all we need now [nothing material at all] and hope everyone' s collective prayers will be heard.  When people ask what they can do I tell them prayers and to support the Foundation, it is our only hopes.  It has gotten down to that!  A hell on earth until someone discovers something to help us [about 40-some thymic patients now].

 You mentioned the hair and your new med.  Thinning has been a constant with me for 3 years.  And the first radiation caused a bald spot because they went up to my neck.  If I went with the cisplatin, the hair goes immediately; I don't know about the ALimta.  It is depressing to think about.  Lucille and I always say we don't want to die having no hair.  We know it is minor in the scheme of things but cancer takes so much away from you that you want some shred of your old life and dignity.   Damn long hair commercials don't make it any easier. It is our society.

 For you, the other day, I put on a pair of my special earrings and we bought a nice box of special chocolates!   And we ate lunch by the ocean. We try to do something special every day.  Alan is incredible how he motivates me to get out of the house.  For short periods even.

 You asked if I have a list of things I'd like to do; my  very favorite thing is of course sitting with Alan. I can't get enough of that!   Has been always since our first date in 1963!  We have done so much, that it would take a book to tell you the special experiences we have had. We have discussed this over and over and there is no place we'd want to go or thing to do ---we were just saying how anything else would pale in light of some of the things we've done.

 We traveled all over and went thru a phase where we only stayed in castles.  Here is only one tale.

  We stayed in a Scottish baronial mansion with a Lord and Lady [near Edinburgh].  They took us to a friend's house for dinner - a simple farmer, they said.  He lived in a castle with a coat of arms over the door. The friend had 1000 sheep; they killed one for us for dinner.  The entire family came to this dinner to meet the Americans, and the men dressed in kilts [we have photos].  Anyway, dessert was fresh strawberries from the garden and fresh whipped cream from the cows.  We giggled ourselves to sleep when the Lord brought us a hot water bottle to put in the bed at night to keep warm.

 We always gravitated to the ocean wherever we were and now we live there. So on my list is  I just want to enjoy my town and beach in good health.  I wouldn't think of traveling to another one. There is so much to do here and I'd like to do the things we did when we first moved here.   When we were younger we did a 3 day [150 miles] bicycling trip in Vermont's green mountains and that was hard.  It is all uphill mountains.  We love cycling here because it is flat.  And the next town up has a boardwalk over the beach so we go to cycle there.  It is about 4 miles long.  If we go early enough in the morning, we can continue onto the Atlantic City boardwalk which is another 4 miles.  We like to see the sites there. But I haven't had the energy. It is unrealistic to think of that level of biking so we did ride a few blocks the other day to see the ocean.

 So we go over your question often and ask do we have any regrets, is there anything we missed doing, and is there anything we want to do.  We come up empty - but have memories of some pretty exciting times that can not be duplicated.  We flew to jungles to see pyramids, saw the Dead Sea and the Jordan, and have been to some incredible black tie charity affairs where we met notables up close.

 Thank you for your thoughts; it was truly nice to read such a caring well thought out email and it does help to put my mind in a different frame of reference.  It is impressive how you are able to verbalize such hard topics and I appreciate it so much

 

5-24-05

I have just been light on doing email and doing a lot of something I usually don't do [laying low and quiet].  This shook me to the very fiber [ha - d.n.a. ] of my being.   So we made an appointment with  a therapist but found out she doesn't take our insurance.  Another referral though panned out.

  We try to do something special every day.  Alan is incredible how he motivates me to get out of the house.  For short periods even. Today we met Dolores [the new widow - remember Arthur] on the boardwalk in Ventnor to go a few block walk.

 Just got emails from 2 patients on Alimta and it is a joy reading how Terrell plays golf. And Lynn took hula lessons with her daughter. Then for sure I can go to the market and take little walks, I hope.   Lynn mentioned she has some nerve pain; I am hoping the trigeminal doesn't resurrect itself like it did with the gleevec.

 A new technique that an R.N. from the local synagogue is promoting [she did a seminar at Gilda's yesterday] is called Attractor Field Technique.  It is an interesting concept that uses tones on a c.d to adjust the body's energy fields.  Specific diseases supposedly occur within specific energy fields.  Like a tornado can occur only under certain pressure and conditions; they say a disease occurs only within a specific energy field.  This woman is a breast cancer survivor and does an amazing healing service.

  Your answer said it all and we appreciate it more that we can say - it made me feel such relief to read those words.   "as long as you are doing something."  There are too many people that like to 2nd guess our choices.  And we don't need that since we can't choose everything at once and we are 2nd guessing ourselves.

 

5-25-05

Well, we are home.  The deed be done. Well, this morning I had my first chemo infusion. It was inevitable sooner or later.  Dr. Stevenson made a plan and recommended the drug Alimta and may it be our miracle.  It seems we've been putting off this major step for over 3 years.

  It started off un-nerving; they began late, a half hour after my appointment so I was chomping at the bit.  Then she missed my vein.  She tried for an area between the wrist and elbow and I was not happy.  It blew up into a black mass quickly so I made her stop probing around.   What pain.

 Then she said something I never heard before and remember, this is my profession that I still read journals about.   I didn't let on about that and let her hang herself some more.  She said almost that it was MY fault because I was nervous and the valve in the vein shut down.  That is horse manure. What a load. She missed and tried to pin it on me.

 Told me to take valium next time.  She is way off but I kept my cool and didn't begin my usual menacing behavior [ha ha haaa] and something special happened.

 Simultaneously I was wondering if the President or Peter Jennings would sit in an impersonal room like that.  This nurse suggested next week we take one of the 2 PRIVATE rooms with massage chairs [to calm me].  The chair plays any c.d. you want and Alan can use headphones to hear it too.  Rock on!  A silver lining to having the vein missed. 

 There were 4 I.V. bags that took over an hour to go in - saline, steroids, an anti-emetic, and the Alimta. 

Alan sat with me and we played a c.d. we just got - no words, no music, just tonals.

 Then there was a huge screen t.v. and we put on channel 6, anything to keep our minds off where we are.  It can't help but be depressing.  I try to be thankful for the torture and know it can bomb out the bastards but reality is all around us there.

 It was a delight to leave and walk among the beautiful fresh raindrops.

 Steroids are great - sometimes - as you too well know.  I had enough energy to make it to the supermarket so that's where I was.  I saw  a friend and her seeing me the day after stopped her in her tracks; she was so excited.  May it last.

 Now to pray, with everyone's help, that it works a miracle.

 I know what you mean when you say you'd be home hating life; other friends tell me they'd stay home, under the covers and never come out.  Really, until this winter I was most positive.  But the constant reports with bad news did get to me finally.  I even got a hat that is embroidered Cancer Sucks.

 Usually when we go thru something like this [surgery, radiation, etc.], if I am feeling well, we like to get out of the house a little since I have been in it for way too long.  Alan likes to take me on short excursions for a change of scenery.   So our friends know that a walk around the block or getting a custard does me a world of good and away from the same 4 walls and t.v.screen. 

  The other complication is I am now in the world of the immunosurpressed and we keep the house a fortress from cross-contamination.  If I caught anything now, it would do me in.  We don't shake hands, hug or kiss others or go near children.  It is limiting but has worked so far and I avoid wearing a mask.

 

5-27-05

Death to cancer!  As I wrote this subject above, it looks like one of those
spam pieces of merde. A friend from Lower Merion [sends a  cheerleader email
every day since the beginning]  always makes an analogy of war to the
cancer; she calls the cancer cells the al quaeda and our trio of cutting,
radiation and poisoning, the weapons of mass destruction.

Anyway, today my neck was so tight inside, that eating made me go into a rage.  The food just stuck at the back of my throat and wouldn't go down, even with sufficient liquids.  I start to panic because it hits the gag reflex.  I want to eat, know I have to but the body is really not helping me do this.  I cut an Excedrin in half and one of the pieces stuck in my throat for a half hour.  Can't believe there is nothing to do to help.  It is like being strangled alive.  I get very upset before we have to eat.  In between it is like there is something [like a pill] stuck in my throat.

 This doesn't bode well; I hope and hope it will disappear miraculously.

 Well, I am not sure if this is an immediate effect or not.  Alimta can cause mouth and throat sores though this doesn't seem to be like the ones I had with the radiations.  This seems like what I have had since January and it is getting worse.  Like a piece of pretzel just sitting there scratching.  They gave me nystatin and baking soda and salt mouthwashes.  Also I had a lot of tiny pimples on my face.

 

5-29-05

Yes I am giving Alimta a chance, but of course, it has the upper hand. Today was that big brunch we go to every year on the Sunday of Memorial day.  Wasn't sure if we'd go [it is down the block] but I pushed myself.   I didn't think I could do the bagel but I pulled out some of the middle and smeared it with cream cheese and got most down [ no crust].   I want to be there with neighbors and friends [that are always there for me, those like you].  But there are a lot of free loaders that come [you remember that awful crew we used to sit with on the old beach in Margate] that I haven't seen in a year and I am not able to deal with their phony inquiries and multitude of questions.  Alan said I don't have to answer them.  So I didn't.  We took our food across the street and sat in the town gazebo in the shade.  Watched the mummers for a while.

 The rest of the day I was exhausted so we hope the drug is doing its thing.

 

5-30-05

Very good idea......Alimta is my new best friend.  That was clever.  We are like Siamese twins right now.

 Today, I felt ambitious, and in need of my own cooking so I made pizza dough!  Don't ask me where this came from but we had homemade pizza for dinner and it went down well. 

 

5-31-05

I am so sorry.  Thanks for calling [all day, talking has been a strain and it is really painful].    I rage because you are who I want to talk to most.  The other problem is my neck is so painful that it is hard to hold it up for long periods.  And I had just tried to swallow a HALF of an Excedrin to help matters and even that was stuck in my throat.  Still hadn't moved down [though I tried whooshing water down]...when you called...so I was even more uncomfortable.

 We ordered a brick with my father's name and rank and army dates on it to be installed at the town veteran's memorial.  We went to see it one afternoon and it was very nice.  The memorial was built last year and this year they offered the gray paver bricks for engraving.

 

6-1-05

 Yes, I am trying to visualize but it just seems like 3 + years of visualizing has made my neck go in the wrong direction. But I will keep trying!   I do like thinking that every second the Alimta is scrambling the bastard d.n.a. 

 

6-3-05

I absolutely loved your supportive words on the I.V. bitch.  GREAT subject - you are so funny [I already put my plan of action against her into the works].  Found a nurse practitioner there, that is a dream [the opposite of the f____in' moron, as one of my physician friends called her] and started by tattling. Then I 'reserved' her for my next infusion.   Was going to change drs. if there was no one else with a sweet attitude.  Yes, the new nurse is more like it.  She went over in detail,all my side effects and gave me her email address  since my voice is bad again.

 There are some good days and some not so good.  The better ones are when I take steroids but that I try not to abuse ---they be strong stuff. It is mainly taken to help me get some relief in that strangling feeling in my neck.   Mainly most days I have intense fatigue which is more like no desire to move and side effects from the drugs to prevent side effects. Ack ------ 

 

6-4-05

Well, the improvement is sure taking too long......like 3 and a half years too long at this point [but whose counting, right?].  I visualize so much, it looks like I am not even 'here' in the 'present'. So what happens - today my neck has been tighter than ever, feels more 'lumpy', and my voice is gone from the 'swelling' inside.

 'One thing we did do is get the slides from Penn., SEND THE SLIDES TO OHIO and have, at least for a few days for my denial corner in my mind.  It hit us that the cytologist who read my slides the day of the biopsy told us she never saw a thymic cancer . The path. In Ohio is an expert on it. But the results were the same - he called yesterday.

  Had to go back to the med. onc. this week when they take blood to see your blood values - my white count last week was in the high range [they said from the steroids] and now it was half. But it was normal.  Glad I had a cushion so they don't have to give those nupogen shots. Red count was good so no procrit shots. Etc.   I  tattled so the moron doesn't insult anyone else's intelligence. Then I 'reserved' the wonderful n.p.  for my next infusion on June 15th.   

 

6-5-05

You are right - it is hard to distract myself from my neck since it is in use all the time.  If I look up, it hurts.  If I turn to the left or the right, it hurts.  Any movement sets it off.  Sometimes it is too 'heavy' to even hold up so I need to rest my head back.  The neck is pivotal in your daily movements [pardon the pun].  Every time I swallow, I feel a 'lump.'  But I do try to busy myself as best I can.

 

6-7-05

But coincidentally,  my dr. Stevenson called today from Cooper to see how I am doing.  He is a doll.  He said he is hoping I do well on it since I have not had a lot of other chemos in my body.  From his mouth to God's ears...

 

6-8-05

 The other day, a younger lady I know stood there and kept staring at me and saying how nice my teeth 'still' looked.  I must know the biggest pieces of bovine elimination on the planet. Alan says 'they' flock to me - I am a piece of flypaper for freaks.

 Suddenly yesterday and unfortunately we  received a lot of 'in memory' donations to the Foundation for a thymic patient that just died [Jose who was 37, diagnosed in 2003,  and on Alimta - it shook us up].  This is the part of the work that I wish Alan didn't have to do.

 June 15th is the 2nd cycle infusion, and then June 27th is the P.E.T. scan [at A.M.I.] this time.    I have all of a sudden developed a lot of aches and pains - like in my upper back, lower abdomen.  And am not sleeping well.  I thought maybe the 1st week this may happen but didn't expect this in the 2nd week.

We have to think of ALimta as our new best 'slap-'em-on-the-back-POW' friend that is here to help us.

Today was not great.  I seem to be bouncing from being held down from the side effects to being able to go out awhile.   I thought maybe the 1st week this may happen but didn't expect this in the 2nd week.
I couldn't sleep well last night  [the drs. say that chemo affects the sleep] because whatever side I lay on, something hurt - an arm, my back, a hip.  I got anxious and nervous and had to take a valium.  This morning my neck felt like it was more preggers than ever and I couldn't wake up enough to do much.  It is hard to tolerate myself this way anymore.

 Later in the day I forced myself to go to the supermarket with Alan. 

 

6-9-05

 

You will love this; as usual, I was validated today.  It felt good.  One of the nurses told me they have MANY complaints about the I.v. bitch and even the staff has problems with her.  The drs. have tried to address it.  So I told the dr. in detail today and showed her my arm which, now 2 weeks after her brutality, still looks bad.  I told the dr. that her nurse Nora, the good one, kept her my business. 

 The chemo  is 100% poison and it has to be - to kill the cancer cells.   The worst side effects so far are a total body fatigue [like you are dead from head to toe] and the constant discomfort in  the neck. 

 Had a B12 shot yesterday in preparation for the 2nd infusion, next week.  They also did my blood counts and all is normal and I don't need the boosting shots.  Here is a question for you. Do you think we are doing the right thing.  The last few days, I  have developed some stomach pains.  Like twinges running across my stomach [belly button area].  So since Monday I have not taken the decadron, thinking it may have been the extra doses of that they gave me to reduce my neck swelling. No one knows if it could be the Alimta which causes mouth sores [so whose to say it doesn't affect lower down?].

  Last night though the pains woke me up [no nausea, vomiting, blood] so I took an acidphex, which worked better than the nexium.  Though I still have some pains - not when I eat - when I yawn or belch.  I noticed some of the pains are higher up in the abdomen today at times, even my left shoulder [the bad side].  Dr. Hollander said to try Carafate also.  I need this to not get worse and to go away before Tuesday which is when they start me on the steroids again in preparation for the next day's infusion.  They say I have to have those.

 When I inhale at times it hurts too. So we are polling all the drs.   Now I have more RX's.  Pharmacies do great because of cancer patients.

  It  seems so different than what I expected - - -  to be bouncing from being held down from the side effects to being able to go out awhile.   I thought maybe the 1st week this may happen but didn't expect this in the 2nd week.

 

6-11-05

I don't think these are stress pains - I know those well from teaching.  This is definitely a drug reaction or something organic going on.   The pains even moved higher into my left shoulder, and if I inhale, I feel it.  The Carafate [a coating liquid] is doing some good in the abdomen  for me.

 Wow, do I look battered.  It was so odd; she took my blood from my left arm [the side of the old neck surgery and took out lymph nodes, where they said to not really use the veins - but we are branching out a little to that side since my neck is so full of scar tissue that it can't support a port] and 3 inches below where the tourniquet was, it is a huge black and blue mark.  This never happened before.  Matching arms.

 Last night I took a Tylenol PM and got better sleep.  So today I was better than yesterday.  It is like being bipolar.

 

 6-14-05

Just wanted to thank you two so much for coming to the beach and sitting with us  -  that is the apex of friendship.  It is very touching to see people go out of their way to drag chairs to keep us company and you have to know it means the world to us.  Just to have a break from the sofa and t.v for the lovely panorama with supportive people is medicinal.  We are lucky to have that resource at our fingertips and more importantly, and several at Gilda's Club yesterday told us, we are lucky to have 6 friends that did that for us.

 Dr. A did call yesterday - what a man!  He always says just the right thing to get us out of the funk for a while.

 Preparing for tomorrow now - got some new side effects today.  My body always surprises me.  I thought by the end of the 3 week cycle I'd get a day 'off' for good behavior. 

 Call anytime you want to sit on the beach - if I handle this dose well, we will go again this weekend.  Lifeguards start weekdays next week and we will go a day or two mid week also [depending - always have to put the disclaimer in - merde].

 The chemo has increased the swelling in my neck even more, if you can imagine, so what little use of my vocal cords that  I had, has been taken away from me.  Email is my best communication means right now.  And the muscles and nerves and tissue is so tight, there is little mobility in my neck to turn it.  This is the worst - I can not drive.  When the internal fatigue isn't to bad I do emails for about 15 minutes.  I pray the tumors stabilize or decrease, but I don't know how all these other tissues will ever return to a painless state. That worries me.

 SO food is pretty far out of my mind.  It is just a function I force myself to do.  Not pleasant.  Yogurt is a turn off lately so I made chocolate mousse and take some pills with that.

 We rent a lot of movies - can't go in the theatre and chance any infection with my narrow restricted airway.

 You are great.  We know so many great people that each support in the way they best can.  We treasure you all.  We made it to the beach for a little while on Saturday and Sunday afternoon.    Each day a few couples we know came to the beach and sat with us.  It was the best I have felt in months [got ice cream from the ice cream bitch] and it was very touching because they came from Margate and Seaview Harbor by car with  chairs.  It was so good for Alan so  it meant the world to me.  Just to have a break from the sofa and t.v for the lovely panorama was medicinal.  We are lucky to have that resource at our fingertips and more importantly,  we are lucky to have  friends that help us out in these ways.

  I stayed on a regime of Aciphex and Carafate and in 2 days I was sleeping better and all the pain on inhalation is gone.  The steroid [decadron] is part of the chemo routine and that is the day before, day of chemo, and day after to take 2 doses of 5 mg. So I started today since tomorrow is another infusion of Alimta.  Now we'll see if we don't have a repeat of that pain.  Rich gave me many samples of the acid reflux meds. The acidphex is the one which gives me the least side affects so the oncologist called in the RX for more and of course,  this is the one the insurance wants authorization on.

 

6-16-05

Rich's staff are the best.  His business person  sent me some samples to tide me over.  My friend Sherry Welsh is picking them up - she has a place in Margate and will bring them down.  I suppose I will have to make a big issue over this with the local staff at the oncologist for not authorizing it in a timely fashion.  They have been dragging their knuckles [oops - feet] since last Friday.  All I get is it is not "my job."

 Plus we are having trouble getting a therapist.  For over  a month now, we have been trying to find a therapist to help us deal with the grief in front of us – we have a lot of questions.

 We received a recommendation of  a local lady from Gilda's [she would be ideal in treating this type of situation] and made an immediate appointment for Thursday, 5-26-05 only to find out that our plan doesn’t cover her.

Alan called Personal Choice [May]  and was told we have to go through Magellan Company.  We called and they said they have a list we had to adhere to.  They emailed it to us and it is extremely limited.  In addition, the few names on there are not satisfactory for many many reasons.    It is frightening to see the level of incompetence, lack of courtesy, arrogant attitude and poor reputation,.

 Cydney Savage [never called back]

 Sharon Harper [when answered we were told that she no longer works there and that the new person was S.Gowda – but from one of my physicians’practices, we were told not to use her anyway because “we have not had one patient to say a good thing about her.”]

 Lewis Lazarus [a message said that he can not be reached at 609-792-8982; that we should call 856-577-1565.  We did and call and he never called us back.

 Joyce Simononis  [not in plan anymore]

 S. Gowda  [around May 25th, made an appointment for 3 weeks later, June 16th: we were told by several local doctors that it would not be a good place for me to go since he keeps you waiting in the waiting room for hours and since I am immunosurpressed, from the chemo, I’d risk an infection; we were also upset that the doctors told us that their patients complain that they do not go back because he is not understandable]

June 8, 2005 I called Magellan to complain and reached Demonto and asked for a supervisor or C.E.O.’s office.   He addressed me as Barbara, though we never met and refused to connect me, making me repeat information over and over [talking is so painful ]

 I said I would like him to authorize the original therapist we heard of because we are out of names and want to do something immediately, already, like that day.

 Finally he said he’d put me through to a care manager.  I was disconnected and livid.  No one called back.  Alan took over and got Terry Crump  [she said her title was supervisor of customer service] and she’d call back on Friday, WHICH SHE DID NOT, OR ANY DAY THEREAFTER!

Isn't this a deplorable situation. They should be afraid.  I've started my campaign.