February 17 to April 16, 2005

2-17-05

Because of this loss of appetite, I don't want to plan anything around food [we have decided not to go to casino night - I can't stand putting food in my mouth - chemo can ruin the taste of food - nothing appeals to me at all].

 

Here is the work in progress; the chopper Alan is making.  It is still out for painting now -a seashore beach theme.   You'll get the gist of it. What makes it a chopper is the front comes out further on an angle.  Did you ever see that show where the father and son build them and they fight the whole time.

 

http://www.cameronmathison.net/longportchopper.htm

 

The  problem is about a week ago, I started having less and less of an appetite and some diarrhea.  Lost 10 pounds. I tried to go up to 100 mg. of the Gleevec but the right side of my face and head increasingly got more painful;  a constant headache over my right eye day and night, a burning pain in my gums on the right side, and in the roof of my mouth and teeth.  So for now I am staying at 75 mg. 

 

 My neck lately feels more swollen than usual.   I think that the Gleevec can create the pressure within from whatever it does with fluids.  It seems more than a coincidence since almost all of my side affects are in that area  ---  the trigeminal nerve and then my optic nerve. The swelling is so severe that I can't talk above a  whisper most of the time [so I wonder if there is even more than my usual edema pressing on my vocal cords] .

 

I am trying so hard; everyone wants me to stick with it and I know it could mean my life but to feel sick and in pain all the time from it is no quality of life either. 

 

2-18-05


The medical oncologist said we should add a CT scan of the head and neck to one I will normally be getting of the chest.   He wants me to move up the scans to this coming week; I got it set for Thursday when I called but will
try to talk to one of the radiologists at the imaging center and not the telephone answerer, to try to get it earlier in the week.  Then after the scans, he'd like me to see him by the end of the week.

Alan's motorcycle isn't a kit.  He bought a new cycle [he wanted to save money and get a used one but I was worried it would mechanically not be safe; it was only a difference of a couple thousand dollars and you can't put a price on 'safe' so I said get a new one] .  Now he is buying new and fancy parts for it and dismantling sections and re-building them to make it look like a chopper.

 

We realized yesterday [again] that I can only go places that are smoke-free. We each had a $25.00 voucher for the slots at the Borgata and we thought it is too good to pass up.  We did okay.  But the smoke made me choke.  Just
walking thru the casino to get to the smoke-free section.  My airway gets more and more restricted and more things irritate it than before.


So if we go to the Quarter we need to pick a restaurant that is smoke-free. I know Carmine's isn't.  I called and they aren't - do you know about the others. If it has a bar and they allow smoking at that, then the smoke goes all over.   Like our experience at Steve and Schnookies a couple years ago.  But maybe we can find one that is there - why can't every state be like N.Y.

Have you been to Sails - it is totally smoke-free, I know.   No smoking at the bar either.

 

2-20-05

Alan is doing great except for a 6 inch black and blue mark where the anesthesiologist missed his vein the first time.

 

Thank you for your good wishes with my neck.  Luckily I was able to reschedule the scans for tomorrow afternoon so by Wednesday we should have some answers.  Very nervous - as usual. We will have to drive up to Phila. to Penn then or Thursday.  I hope the weather isn't too rough and the roads are good.

 

You are so right about people.  And our culture.  The scum bag in FL. answered me and as expected, she did not get her crime at all.  She danced all around it.  So it has been a few weeks and I will not answer her.  I have no time for insensitive people.  Our friend with breast cancer has a lumpectomy and now needs radiation.  Another friend of mine heard her neighbor telling people that she is FINE.  That is some way to minimize cancer isn't it.  Those that heard this thought my friend tested benign.  I don't get people.  I guess to some, unless you are getting a mastectomy and chemo, you are FINE.

 

2-21-05

Well, the scans are over - no PET this time, thank goodness. Now we wait. The technician was very very nice and that helped a lot; I didn't even cough on the table.

 

I try to think of my blessing, which is Alan.  He is so amazing and he is my bliss.  I figure how can I ever complain and want more, when I have him. My strength comes from Alan.

 

2-22-05

Most of the day between going over there, I just felt so blah.  I hate being anorexic.   I just can't eat - I try to get a few bites in but it has gotten worse each day [shh - I did not take the Gleevec today I felt so terrible].  I really think that is the Gleevec too.  Now we are both really worried.    It took me 3 hours this morning to choke down a tiny corn muffin. It is not fun to eat. Nothing appeals to me.

 

2-24-05

 We drove up.  In the snow!  We were frightened and thought about not going but we had to get the results of the scans.  My appointment was for 12:30 but we called and asked if we could come earlier.  They took me almost right away so we could get back on the road before it got really really bad.

 

The verdict is that he said the Gleevec must be doing something even at the tiny dose since the scans are as stable as they can be even though one tumor grew 6 mm. The reading radiologists  aren't experts like my own drs., and they embellish minutia we are hoping.  One tumor did grow 40 % which is not good.  He isn't sure what is in my pharynx and hopes it is swelling, especially since I just had the ENT scoping. But the radiologist reading the films mentioned it could be a mass. That upset me more than you could know - I never want my neck slit open again.   He said he has seen other patients that have had radiation and then when they get chemo, the radiated area gets very affected similar to what mine is doing to me. 

 

He looked at the scans too and said  to stick with the drug if I can, since the other chemos have more effects. Or I'd need the radiation.  He wants to hold that off.  And he has patients that take 3 months to adjust to the Gleevec and he is giving me meds to control the side affects.  We'll see if that works.  I have an anti-nausea and something to stimulate my appetite.  If that doesn't work he'll give me marijuana pills.  Is that funny?  Of course I couldn't tolerate the smoke.

 

2-25-05

Yes now we have a little hope.  Like you we hope the tumors get smaller next time; that would be a miracle.  But we keep in mind I have tried a lot of protocols and it always seems the first 2 months I did fine [remember the Octreotide shots] and then......

 

Damn cancer cells mutate to get around the chemical and start up again.  This is the major problem researchers have.

 

I think the anti-nausea pill is working some.  I couldn't eat this morning but by this afternoon I got a half of potato in. And a donut. Dinner went down easier.  Their scale showed that I lost a lot of weight and they monitor that carefully.  99% of the world is watching their weight and I can't stand food most of the day...go figure. All you see on t.v. is food commercials and shows with food. Blah.

 

2-27-05

For some reason my voice also is actually worse some days.  I can't talk without forcing and it just a whisper.  I think it is edema, I hope, pressing on the vocal cords. I think the more Gleevec I took, the more swelling it caused and felt it was pressing in my throat on the vocal cords. Like someone has their hands around my neck. The medical oncologist, James Stevenson,  at Penn, said that sometimes people who have had radiation and then chemo, find that the chemo affects the radiated area, such as is happening in my case. 

 

Thank you for your wishes and like you, we wish for a magic bullet for all of us.  What can I say - you and I are just so tired and weary at times, of this battle.  It is mind boggling how we are medical oddities.  I have always been
different but this takes the cake.

 

I am not on the computer much since my energy level stinks and it makes me choke.

 

I know exactly what you mean; naps do not rejuvenate.  And waking up feeling horrible is the norm for me too.  The cough syrup gives me a 'hangover.'

 

 We went out to dinner last night - the first time in I don't know how long.  We met old friends at a bayside restaurant and I took an anti-nausea pill an hour ahead so I was able to eat all my chicken and potatoes.  Alan and I were worried at first because it is timed and they were 15 minutes LATE [I despise that] and then they took another 15 minutes to make up their mind what to order. So Alan and I were thrilled I could eat. People have no clue what all that means when you are on medicine.

 

Anyway, this sounds so weird, but they told me while on GLeevec, not to go anywhere near people who have gotten polio vaccines [I have a whole list of instructions].  SO I wanted to ask you if you know what age children are when they get that vaccine.  I have no idea when they receive it.

 

3-1-05

Not only were they late for dinner, but he has had a habit now for a few years of saying 'what' after everything anyone says.  Most of the time, he hears you and he says it like a habit.  I can not barely get a thought out once without forcing my voice, so there was no way I'd repeat everything I said.  He made Alan and his wife repeat my sentences.

 

My energy wavers.  I made a beef barley soup the other day but last night I felt awful - the roof of my mouth and teeth burned after I took the Gleevec plus I couldn't stop coughing until I took some Demerol.  Today I am a little better in those regards but my neck feels so tight.

 

3-2-05

Last night I decided to return to my favorite class at the gym and I did 45 minutes of it ---it felt very very good. 

 

3-3-05

May ditch this chemo soon and try something else.  I now don't take it every day of the week.  Such a rebel.

 

My neck is so swollen that last night I woke up and could not breathe.  I thought I was going to die.

 

3-4-05

Thank you so much for thinking of the zophran and megace.  Most of the time I am eating okay now.  

 

I have been persevering with the GLeevec especially so as not to disappoint Alan or my supporters.   But it is a terribly strong chemo.   It has been a real challenge. 

 

The main discomfort still, is my neck  feels so swollen inside;   last night [Wednesday evening] I woke up and could not breatheI just couldn't inhale.  Alan got me to the door for fresh air, rapped my back and after what seemed an eternity, I was able to breathe normally again.  It was so terrifying I was afraid to go to sleep last night.  I had some of those episodes when I got radiation but that was 3 years ago and it was from swelling from the burnt internal tissue. 

 

3-6-05

Tuesday we will go see Dr. Brady [the radiation oncologist] to read the scans; a 3rd opinion is always called for.  Then I know he will push me to get radiation and get off the Gleevec.  So here we go again.  Back to where we were a couple of months ago - of course, I am stalling.

 

It is important that Mayo has your statistic - their numbers are way too low for thymic cancers. 

 

Our home is new - 5 years old.  We are the only owners so there have never been any pets.  I am so allergic that I don't allow guests in that even have pets since I don't want the dander falling off of their clothes onto my furniture. 

  

Yes, I know I am alive but I am very uncomfortable and sick all day and have no energy to do much, except lay around. It is hard to explain but if you ever had the flu and upset stomach, you don't feel like doing anything.  Eating anything.  Shopping for anything or going anywhere.   It is a sick feeling pervasive in the whole body and mind and now a quandary since so much keeps going wrong with my body while I am on it. 

 

 It has been so bad at times that I said to some  that I don't want people to pray for my health but to have a release quickly from the suffering. I feel so bad because I upset Alan so much when he heard this.  But when I am coughing till I gag and throw up and can't catch my breath, it is hard to want to exist under that.  Then when I am not coughing and am not nauseous, I am more positive.  The coughing is definitely worse when I take the gleevec.

 

3-7-05

The weather hasn't affected me much since most days I don't even feel like going out.   All these drugs are so toxic.  I didn't expect it from the Gleevec because I know people on it and they live a regular life.  Me...I am so different.  I guess everyone's body is different.

 

I hope Dr. Brady suggests something else; I can't take the Gleevec any more. I feel it is hurting me more than helping - my back aches again from the coughing; my stomach and esophagus hurt from the gagging; my eyes hurt from the glaucoma, etc.

 

3-8-05

We were at Hahneman today and it looks like I will stop the Gleevec chemo regime even though it has slowed the tumors down, the side affects have gotten the best of me.  Seems I will  get radiation treatments to kill the new masses.  It has been a tough decision to make, having gone thru it 3 years ago and knowing what the road ahead is like.

 

I will make my appointments here at the shore.  Dr. Brady was wonderfully understanding and compassionate and will call the dr. here at the shore with his thoughts.

 

Probably I don't need a week or 2 to think about it since that is all I have done for months now.  Yes, I think the side effects have gotten the best of me; I really tried hard to stick with this regime but feel that you are right - it is time to visit Dr. Cassir's linear accelerator again.  Maybe it is a good idea to take a break from the Gleevec now since that would maybe get me off a lot of other medications.  After the radiation, we can try it again unless you have something new.

 

Dr. Luther Brady  has always taken an interest in my case for many reasons [he is a Foundation board member, he involves his students since it is rare, etc.]    He also thinks it is a good idea to have radiation at this point.  He feels that with I.M.R.T. technology they could minimize the impact of  side reactions on me and avoid damage to my esophagus and organs.  He thinks my voice problem is the tumor pressing on a nerve that leads to the vocal cords. 

 

 Thanks for the suggestions if that misery every happens again; Dr. Brady and his fellow also gave me a few RX's that may help.   We do have steam from a vaporizer all nite by my bed.  Dr. Brady feels the bronchial spasms may be coming from the tumor pressing  and my voice problem is the tumor pressing on a nerve that leads to the vocal cords. 

 

3-10-05

...I will be glowing in the dark. Tomorrow is major here - I go over to the hospital and get started on the planning  for the radiation.  You were with me since day one last time.  Tomorrow means tattoos and pinpointing where the radiation beams go precisely.  I hope ALan can stay with me.  I will beseech the dr.

 

Today I met my former dean from Temple at the high school where he is supervising a student teacher.  We both observed him [do a poor job].  Alan drove me and the 3 of us discussed it over lunch afterwards.  It felt good to  get away from the medical situation.

 

3-12-05

I went over to the hospital and for 4 hours, the dr. got started on the planning  for the radiation.    It meant 3 more tattoos on my chest;  I am marked with markers of all colors. Laying flat on my back tends to make me cough and they don't want me to move because then the beam could miss.   Nothing like the pressure to make it happen more.  I will take valium each day before the treatment it was decided.

 

Dr. Cassir will try to minimize the impact of  side reactions on me and avoid damage to my esophagus and organs. The heart, lung, stomach and aorta are in the way of the radiation beams.  The other night I had a panic attack thinking of the side affects they told me about.  I got so frightened because I remembered how I couldn't swallow. The burns in the esophagus from the beams caused that.  The dr. said it is as if you swallow drain cleaner.

 

 He told me I may have breathing problems since the lung tissue is involved and worse, it may be permanent.  At what cost do I keep inflicting damage to myself I wondered.  He said I can always stop the treatments or take a break.  Those were my secret thoughts anyway.  This is not simple radiation he explained like a breast which has NO other organs in the way.   He said it will take a week to make the plan with a physicist and other radiologists.  It seems more complicated than my other Drs.  let on and now I know why other drs. said it should be the last thing I try.

 

Today was a shining light for me after yesterday.  Three of my soap actors were at the TROP casino doing a meet and greet.  We were invited by them to visit in their green room.  They surprised the hell out of Alan and I.  They auctioned off some items for the Foundation and we made $5000.oo I couldn't help crying.  One item was lunch with Cameron Mathison [up for a daytime Emmy] on the ABC set of "All My Children."    It went for $1250.00!!!!!!

 

BUT, 2 other people wanted it for that price so he agreed to let them all come for lunch too and we made 1250.00 TIMES THREE.  One actor auctioned off photos for the charity and the other a signed script.  Then we went out to dinner with them. 

 

 I go from the sublime to the ridiculous nightmare in a 24 hour period , don't I?  

 

The Foundation needs funds for research and a well known and published thymic carcinoma dr. approached us yesterday about doing a project at M.D.   Anderson in Texas .  What an omen this was.

 

Now I have to not let you down.  So many major compliments from you.Thanks for making me an inspiration; I don't know if I am worthy of such a high honor.  Sometimes I am a big baby lately.  No I haven't given up; just get tired of the pain and discomfort when it happens too often in one day.  The coughing bouts get to me.  Somehow I will have to get back the state of mind I had last year at this time.  You probably sensed something correct there.

 

3-15-05

You asked what I do normal each day.  Not much - since the chemo, I just like to sit still so I am not sick or coughing.  ALan tried to get me out for a ride each day - the market, Kmart, errands.  You asked if I still like to cook and bake.  In my mind yes!  My body won't let me most days.  There is no way to explain how terrible and tired I feel from the side affects of the chemo; now that I stopped, I hope I get some energy and zest for life back.   

 

Thanks for being a good cheerleader.  I do want to be rid of the cancer, but not at the expense of my life.  For thymic cancer, there are no protocols set up so they have to just keep trying different treatments.  I would love to see the research the Foundation does help others NOT suffer this way.  It is such a cruel cancer.    I am jealous of our friend with breast cancer; she had a small lumpectomy, mild radiation, and she doesn't need chemo; she realizes how lucky she is.  It will be over with in 6 months.  ANd I am going 3 years strong now.  It is so tiring and depressing.  Mornings are the worst for me.

 

As for the side effects compared to Gleevec.  They are different but equally as bad.   The burns in the esophagus from the
beams of radiation are  as if you swallow drain cleaner.   Remember from last time.   A small amount of ice cream was o.k. - the burnt area is still sensitive to cold and rough textures.  And if I can't breathe, that will be big trouble for me...if it causes more swelling or hurts my lung.  And the beam will hit the stomach so that could get upset.  I am very scared but will have hope it doesn't happen.  Though last time, the nurse and dr. were right on the money with the effects - and when they happen too.  Here's to killing the criminals.

 

3-16-05

We got a call today from the radiation oncologist that they want me to come in tomorrow and go over 'the plan.'  This time is so nerve-wracking even though I am trying to mediate and use imagery.  I just can't shake this depression.  I may need a different med. Nothing much interests me.  It is hard to hide from Alan.

 

3-17-05

How quickly life can change.  There are really no words of consolation for the hell you live in now.   It is good you have some friends for support. We can't know what you mean for your type of tragedy but when you say you can't come out of it, we know from dealing with cancer.

 It seems like a dark abyss that we can't climb out of. As the years go on it gets harder to stay positive each time the drs. give us bad reports and I question wanting  to keep getting painful treatments that cause more suffering.

I used to like to be awake because my dreams, at times, were nightmares. ANd for the last 3 years, sleep is an escape because my days have become nightmares.

 

3-19-05

Checked with the drs. so  Alan is making me relaxation C.D.'s and I will take a C.D. player into the linear accelerator room each day and play them during the treatments. Most people have no idea what laying perfectly still and flat on a cold metal table is like and the frightening thoughts we have.  There is no way to tell them how you are alone in the room and hear all kinds of noises from the instrument.  It will be longer  this time ---last time it was 4 minutes.  This time he said it is 2 minutes and then the tech comes in and rotates the table and it will be 10-15 minutes more.

 

Like you I had to wear a mask last time also that bolted my head to the table.   .  But not this time.  It's half dozen of one, 6 of another.  

 

Thursday I saw the radiation oncologist and he said I'll need a g.i. doc [the radiation beam may give me a stomach ulcer] and pulmonologist throughout [the radiation beam goes thru part of the lung and may give me pneumonia]. My left breast is the area one set of beams will go through so that will be burnt this time.    An there was so much more I couldn't absorb all he said.  He will do 4 weeks of treatments, every day, then I will get a PET scan to see if the tumors have been reduced any. He'd like to take me up to 6 or 8 weeks of radiation if my body can tolerate it.   Unfortunately there was also some other news; we were originally told that the old area that was radiated wouldn't be involved this time around.  After more CT scans the other day, they did find they have to overlap the treatment this time. That was also upsetting.

 

I've had a few panic attacks, knowing what the road ahead is like [one thing I had blocked and now remembered is how I couldn't swallow without pain]

 

  It is very  complicated because of where my tumors are, he said.  He doesn't know if he can use  the  I.M.R.T.  technology for all of it.   He will try to minimize the impact of  side reactions on me and avoid damage to my esophagus and organs. The heart, lung, stomach and other tissues are in the way of the radiation beams.   He was honest and told me the possible effects and I may have breathing problems since the lung tissue is involved.  

 

When we lived in Philly, we found a secret to seeing the Flower Show.  We would go the very first evening it opened - they have a black tie preview.  Instead of rubbing elbows with 10,000 people, there are only a 1000 people there.  The floor has hors d'oerve and drink stations interspersed; it was so beautiful and like going back in time for one evening...it was like a time machine taking us back a 100 or so years.   It was so worth the cost of the tickets and a portion goes to charity.

 

Thank you so much for your help and understanding.

 

3-21-05

1 DOWN AND  29 TO GO.

 

Is this ever deja-vu; back to 2002...the way I headed my emails.  I am so happy to have you with me this time around.  We just got back from the hospital and it was a brutal first session.  Before they gave me the treatment, they had to go over all the angles of entry into my body that were formulated on the plan.  Well, I was on my back 45 minutes, with my hands over my head.  I had taken valium and cough syrup and tried not to cough.  But the worst was my left fingers got so numb from that overhead position. Even wiggling them gave no relief.   I had a reiki tape on but was so miserable and in pain I couldn't concentrate.

 

I have brought up cryosurgery but they don't think it is for me.  I guess we should investigate it more.

 

Thank you for your words of compassion; the best anyone can do is send me vibes and prayers and email and hope the side effects never come to be. 

 

 No time off ---2 weeks was about all this prisoner of war got.

 

I did a little better eating yesterday because of the meds that I took to make me hungry; unfortunately it is mostly progesterone.  We went to a 50's type place in Atlantic City called Johnny Rockets.  I had a burger, fries and milkshake [well a half].  It was to bulk up before the big assault.  It was cute- the servers stop and dance every so often.  Upbeat and it helped my morale.

 

3-23-05

Alan and I felt we could start this and at ANYTIME, stop if I get worse.  Hopefully catch any side effect before it is irreversible.  We felt that if this gives me a chance to 'wipe the slate clean' [that would be my mediastinum and lung and trachea / esophagus area], then maybe it is worth a try.  Chemo is a gamble.  As we found the last year, there is no guarantee it will work with thymic carcinomas, but radiation will almost surely melt away the tumors, if I can survive it.  If I just sat back and did nothing, we don't know the road, but can surely guess it would not be good.  And we can get insights from seeing other patients that wrote into the Foundation.

 

It all stinks, anyway you look at it.   They do pinpoint the beams of frying radiation - it is a whole science.  But the instrumentation is designed for the patient to be flat on the metal table.

 

To answer your question, the treatments are EVERY day.  Unless they see me have a bad reaction, then they give me a 'holiday.'  Remember last time - I was burnt to an ash so they stopped for 2 weeks.  So every day is consumed with preparing to go there [I take valium and cough syrup at the right time so it works], being there [ugh], and then coming home and dressing the burnt skin, and then collapsing.

 

And it is exhausting. You know...the cells being killed.  The body has to process the waste from dead cells being produced faster than it is used to.  So instead of getting less painful, the doses actually build up and you get intensified side effects.  No way out of it.  The frying beams just continue to burn, increasing damage that you feel in different ways.

 

The side affects are different from the gleevec...as bad in another way.  For example, already I feel I am wheezing [so the lungs are being burnt].  ANd it feels sometimes as if someone is standing on my chest.  Often, as I inhale, I feel pain. Then I had abdominal pain last night [front to back] - the frying beam does have to go near a part of my stomach. 

 

SO it is as if we trade one torture for another.   Your love, thoughts, and prayers are all I need. I draw on them often.  My treatment time is 3:00 so if we all kill the 'al quaeda' cells together thru a mental process, maybe this will be a fix for me.

 

3-24-05

 It is very upsetting; I am not sure if I wrote this to you but my dr. here, Jorge Cassir, Monday  was in a serious auto accident on the Parkway.  He is still hospitalized...we heard he is anxious to get back to work so he will be okay [broken bones, collapsed lung].

 

Good point - I do try to concentrate on recovery and the blessings in my life.  But when I have a bad choking spell, my mind goes other places.  I know it is not forever, but the days do drag longer than ever before.

 

That also was a great thought - the tumors WILL NOT survive this.  I should make a poster of that.

 

You are the best cheerleader I have - many words of wisdom and I appreciate it because it focuses me.

 

3-26-05

I agree with you - the sneeze or cough can ruin the whole treatment and where the beam goes.  Of course I enjoyed your head-exploding analogy. It is my sense of humor too.  And we know the tumors have got to die from the burning; maybe the other chemos I had this year will keep new ones from popping up.  Well, we can wish can't we.  It may not be realistic but miracles happen.

 

The other 4 sessions this week went better.  And last time I told you about the fatigue - there is no word in our language that can describe how it knocks the stuffing out of me. My treatment is at 3:00 and by 5:00 I can't hold my eyes open. It is something I can't even will myself to do. If Alan didn't bring me water or a snack, I'd never eat.

 

They are beaming 8 or so pathways of the radiation thru me over the span of 10-15 minutes.  One path, for example,  goes in thru my left breast and comes out my right waist.  The damage in between the tumor, which we want to get, and the healthy tissue is a big area.  I am trying to take it one day at a time.

 

Our lungs will match; I have scars on my lungs too from the last radiation.  When it shows up on scans, the reading dr. gets confused until someone tells him what it is from. 

 

Today, since I was 'off' from treatment, Alan took me for a ride to Seaside Heights ---we even walked on the boardwalk there a little and got greasy French  fries[get the food in anyway I can . ] It was beautiful to get out.  A change from that weekly routine is so important. I figured I can sit in the car as well as on the sofa.  Alan really spoils me.

 

I know what you mean about support from people in the form of whatever they choose.  It restores our faith in people to see how good they can be at times like this.  People helped last time by bringing us dinner, which was so welcome since I was too  debilitated too cook then.  This time many have offered to drive me to the treatments so Alan can have a break [but he likes to be there to talk to the nurse or dr.].

 

3-27-05

Thanks for reminding me - Alan calls me the warrior princess.  Thank you for the chant; any and all forms of support I need and welcome.  I have some little Buddas around the house we picked up in our travels.  I burn joss paper and hell notes; and whatever other good luck amulets people send me [like medals].   It all helps to provide a comfort.

 

3-28-05

 The most energy I have is about an hour before we go over to the hospital.  But I'd still prefer to just sit and read or watch t.v.  For someone who never watched t.v., I really appreciate it now

 

3-29-05

 

The radiation oncology department is very good and upbeat - one day they sent each patient home with a vase and daffodils.  Another day each of us got a primrose plant. Any problem I have, I can see the doctors.  Sometimes I see them 3 days in a row [no appointment needed].  While Alan waits there is a computer to use, big screen t.v., snacks - so they try to take the edge off the ordeal.

 

Today was odd; I had to go at a different time since the machine was being put thru quality control checks at my time.  We saw a sheriff pull up and a police car and they brought a man in handcuffs and the orange outfit to get his treatment.  Well, at least they don't discriminate.

 

Trying to eat the best I can - haven't used ensure yet.  Saving that for emergencies.  Ice cream makes me cough worse so I limit it. That was my favorite food.

 

The chance of killing the tumors that are there now is very high.  But the cancer can resurface again elsewhere.  It is the nature of thymic carcinoma.  It lurks in your body and pops up again.  The patients that write into the Foundation have borne this out - some have endured this for 14 years. 

 

4-1-05

Last Monday and they said every Monday will be an extended session because they have to take x-rays on that day.  They make sure the beams are being directed to the correct places  But unfortunately, it takes about another half hour and my left hand goes numb.  By the time I got off the table I had a throbbing headache.

 

Yesterday we were up to Phila.  First to Dr. Brady for a follow up visit to the infusions I had last fall - he approved of this new plan of radiation so that was a tremendous relief.  His professional opinion matters.  Then we saw the pulomonologist at Penn after I had a battery of breathing studies.  The results were of course worse than the first ones I had before the 2003 lung surgery.  He is trying me on yet another inhaler, wants me to persist with the reflux meds, and get our home tested for environmental pollutants.  I do cough worse in the house.  He thinks the cough is a combination of problems - my airways are restricted from the 2 surgeries and radiation:  I have radiation induced asthma: scar tissue on my bronchial tree and lungs...and so on and so on. 

 

And Steve Shuster's good friend, my medical oncologist James Stevenson, is leaving Penn and going to Cooper.  I will follow him there since the person taking over his practice is your 'favorite' Tracey Evans.

 

The very sad news this week is Gail Goldsmith died the other day.  I think she was 43 or 44.She had inflammatory breast cancer; got it the same time I got my merde.  Remember she was my student from Frankford H.S. [one of my top students in 1976] and worked at WYeth.

 

 What a loss!   Her family must be devastated - she has 2 young nephews she adored.  We are going to send a donation in her memory from the THymic Cancer Foundation.

 

Yes Gail worked in I.V.F.  I am learning she has been in great pain the last months, not being able to move, being in an assisted living facility and the cancer was in her brain.  It is tragic.  Tonight is the memorial in Blue Bell - I sent condolences with other students I had taught.  It is hard to believe they are grown and have teenagers themselves now.

 

The similarities between yours and mine are freaky.  This arm-overhead situation is such a coincidence.  In that situation, a regular person has no idea how long a second or minute can be.  And also since they are radiating my chest, this time I must be naked but they cover me with a linen  square when they are done positioning me.

 

4-3-05

You are so dear - thanks for the offer to write and blow off steam.  I think I am too fatigued to even puff.   Support from people in the form of whatever they choose  restores our faith in people[ it is beautiful to see how good they can be at times like this. ]

 

4-4-05

Your words of support help because they speak the truth; as patients we have to keep remembering why we do this.  ANd you helped to remind me.

 

 Being on borrowed time is the term I use too; some don't like it but they aren't in our shoes.  But each day is a gift that I wouldn't have had if I didn't pursue this pain of treatment.  I have a denial side too; we earned it.  We will just keep praying your hands heal and the side effects are not permanent.

 

 The tiredness is from the cells dying - healthy and non - and the body trying to dispose of the toxic by products.  It is a larger amount than in a person not getting radiation.

 

 Constant visualization.  Before, during and after the radiation.  If only we could rid me of this cough.  I try to listen to tapes that heal but the cough persists.  During the treatment I am very sedated with valium and Demerol - so  far so good.

 

We sent Dr. Cassir a fabulous card [pop-up basket of flowers] and lo and behold, he came back today for a few hours.  His associate does not know how he did it; he was only just released from the hospital.

 

4-7-05

And the dietician sent me home with a bag full of 'ensuretype' products.  The nurse tattled on my weight loss so it like getting sent to the principal. I'll try the samples but so far they are hard to get down - blah taste.

 

Yesterday we had an  environmental  specialist to get our home tested for environmental pollutants.  I do cough worse in the house. Been putting this off and off and off.

 I was freaking [even on valium].  He was in every room, testing walls, insulation, air, temperature, humidity...the crawlspace [where he found some mold that we will have to remove].  We are still cleaning up. It is a very expensive but necessary .

 

No more than half a valium because I also take codeine cough syrup.   It is an eerie room.  The doors seal shut and you can hear the vacuum as the techs leave so I can get radiated.  The lights blink,  I like my meditation tapes because it is Alan's voice.  He made them.

 

 The other side effects are pains in my back [Monday I have to see the dr. since the beam of burning rays goes out there - I am afraid if it is hitting my kidney] - my heart is having severe palpitations [same - the beam may be hitting a portion of my heart and throwing off the rhythm] - and ---too tired to even enumerate it all. It is such a serious therapy in all that it can do. We have to track that down...unless the beam of radiation did something.

 

4-9-05

It is almost impossible to explain the depth of fatigue radiation causes me.  It is so much more than a fatigue - it is like an internal death from head to toe.  A sense you are void of feeling - not wanting to move, go out, do anything...everything is dead.

 

So I am in sync with couch potatoes - the sofa and t.v. [thank goodness for great sitcoms] has become my new friend.  And this is so unlike me.  I always moved - like the Eveready Bunny.  I despise this.

 

Yes, I have those metal rods to hold also.  There are also 4 technicians that come in the room to place me on the table - the exact position is crucial.  They pull and tug and line up my tattoos.

 

Thanks for writing - I haven't been on the computer in 3 days.  It makes me cough.  The one way I have to communicate, and it is being ruined for me.  But when I sit outside on the patio and the air blows AWAY from me and the computer, I can sit longer at it.  So here I am for a spell.

 

14 DOWN AND 16 TO GO

But...then I remember that last time, they ADDED extra sessions onto my plan near the end.  They push and push you - bring you as close to death as they can.

 

The cough keeps me up at night if we don't have the windows open enough.  Poor Alan. I have to have the fresh air, not to cough.

 

As for Alan's bike...we are becoming attached to it; it is a work of art.  He hates to ride it for fear a pebble will fly up and scratch it.  It is a  show bike or short rides.  Maybe someday he'll put it on eBay and see what it can fetch.

 

4-12-05

The old area of radiation has not healed and is actually worse as time goes on.  The skin is dark - that is no problem but inside there is beaucoup de scar tissue and it keeps forming for years.  That is just a medical fact [they don't tell you up front].  Anyway the scar tissue is pressing on my esophagus [so I have to take reflux meds] and trachea and bronchi [ hence the choking].  It feels like I am being lynched - like someone is pinching my neck and closing off the 'pipes.'  Now with the new radiation overlapping it is getting worse ---which I can't imagine.  The tightness is keeping me from turning my head without great pain.

 

 Was in a stupor when you called; my worst time.  When we get back from the hospital I have to eat fast or my head will fall into my food [I'd probably suffocate]. 

 

I am eating a little better [real whipped cream, Krispy Kreme donuts, whoppers], not as much as before, but still losing weight.  The drs. say I could eat Hagan Daaz and the calories won't help ---my body is in constant battle mode trying to repair the damage the rays of burning cause. The radiation is a bit lower than last time so swallowing is different.  Texture is important - if something gets dry and stuck, I gag.  The lining is like potholes on a city street.

 

Thinking of you and John all the time and want you to make lots of 'pictures' to hold.  I know what you mean.  I tend to think back a lot on 'pictures' of the past ---happy ones from traveling or special events we treated ourselves to---knowing that it was great to have done them but no chance to repeat them [I am at peace with that]. On to new experiences...

 

No treatment yesterday - I was on the table [like an ironing board] for 15 minutes and they came in and said to rest my numb arms.  Then I could sit up after another 10 minutes; I was coughing.  They said the computer broke.  They kept saying 5 more minutes...several times but I told them I had to leave, at last.  My ophthalmology appointment was in 5 minutes------urgent to check the pressure in my eyes.  Luckily it was staying low so the drops are working.

 

If someone says a 'procedure' is simple it is only because they are NOT having it done to themselves.  Why did it take so long to insert. I am just glad you are o.k. and were able to walk out quickly.  No place like home.

 

People that don't have any illness in their lives, have no clue what our days are like.

 

Last time I had aloe vera to drink and it didn't help but maybe I didn't have enough.  You have to be careful because it can have a laxatative effect.  I do put it on the burnt skin though. Maybe I will try a little to see if it helps the cough. And Biafine!

 

As for the alternate therapies ---remember Gilda Radner.  Saturday Night Live star who had ovarian cancer.  She had a macrobiotic cook and staff.  Died anyway!  I had a friend who only ate perfectly her whole life.  She got ovarian cancer anyway.  SO if it doesn't help to eat right to avoid cancer, why change to that diet once you get it.  If 'they' can prove to me without ANY DOUBT that eating a certain way will cure me, I am there and will do it.  But 'they' can't.  So my last years may as well be filled with eating my favorite foods instead of trying to gag down  substances that I don't have a taste for or can find delicious.

 

4-14-05

The remediation company started today. It is very expensive but we have no
choice.  They vacuum off all the mold, apply a solution to kill spores, and
then they will paint the walls with an anti-mold.  They have a huge air
cleaner going under the house and one in the house; they recommend we leave
while they are working [but I am just so beat up from the radiation that I
lay upstairs in a sealed room].  We still have to get dehumidifiers
installed in the crawlspace so it doesn't happen again. ..the cheapest
estimate for the dehumidifiers alone was $5000.00!   This is so not what we
needed at this time.

 

4-16-05

Thanks for asking about Alan.  He is amazing to me.  Alan has been getting increasingly more anxious, understandably.  The more problems I get from the treatments, the more upsetting it is .  I can not imagine watching me; as for myself, I try to block out what is happening but the picture must stay in his mind. I know if the shoe were on the other foot, I'd be a basket case.  Watching someone I love ill has always torn me apart.

 

That is what we found out - at least the negative surprises are a small percent [maybe one percent of all the people you know].  What got me was total strangers have been more compassionate and helpful than supposed family and friends.

 

 Case in point - similar to your story of Barbara, Jeff Chesin [stephen's brother] HAS NOT CALLED ME ONCE iN OVER THREE YEARS, SENT A CARD, OR IN HIS PRESENCE, ACKNOWLEDGED MY ILLNESS.  The first time I saw him after the first surgery he walked by me, didn't say hello, and ignored me.  I can not and will not be in the presence of people like this; I will not go to any family dinner if he is there.  Hence, skipping Passover.  I will not grieve over this or hate him [he is only doing what he is able to in his own level] but I want nothing to do with him, don't want to see him, or be near him or people like that.   Life is tooo too short to be in the presence of anyone like that.

 

And by the way, s. , never calls to see how we are doing. Except once a few weeks ago, my sister said he wanted to talk to ALan .  So we put them on the line.  They spoke 1/2 an hours and Alan said when they got off s. didn't ONCE ask how I was, how the radiation was going, how I am handling the side effects...nothing.  Like I am not existing.  S. only spoke about computers and motorcycles. 

 

 Stable is a wonderful word [of course decrease in size is our dream but staying and not growing is good].   Not to do any treatments is like a recess to a kid.