May 9 to June 6, 2003

 

 

5-9-03

Today I called the anesthesiology dept. head at Penn because I hadn't heard from them.  At Temple you meet with them the week before.  Penn doesn't do that??????  We looked up the dept. chairs name on the internet [Alan is so good at that] and got a phone number and when I called, he answered himself.


He couldn't have been nicer to me.  He answered our multitude of questions.
I once had a bad experience about 20 years ago and I didn't want those
chemicals [as you'd expect, I have a list so I faxed them over to him].  He
told me the name of my anesthesiologist for Mon. and told me she was a
personal favorite of Dr. Kaiser's. SO that made me feel good.

We needed to be sure they put in antibiotics for my mitral valve prolapse,
and that I could keep taking my valium that morning.

******

We have stopped traveling - it just got to be too hard.  It was Dorothy in the Wizard of Oz who said, "If I ever go looking for my heart's desire again, I won't look any further than my own backyard..."

 

This past week, especially, reminds me of how depressed I would get before a vacation [the thought of leaving the comforts of home].  But of course this is compounded by the fact we are going up for surgery and then the unknown.

 

So we'll be out of touch for a while starting this weekend - it will be nice when we get home and can get our usual schedule back...I function best under normal.

 

5-10-03

yes, it seems like it is a dream to expect us all to be pleasantly surprised on Monday.  Well, for as long as it lasts, it gives a sense of hope. 

 

Did I tell you  I was not allowed to be in any cigarette smoke for 2 weeks prior to this type of lung surgery they said; it could affect adversely the procedure and my recuperation.  Usually that would not be any problem because we never go where there is smoke, but we had planned a meal at  Ventura's which is a mess is that regard.  We canceled because you have to  wait in the bar until our table is ready. Someone wanted to bring me lilacs today.  I had to say no - I can't get a cold or any allergies [no swollen tissues].  We are telling people no flowers or plants because while the lung is healing, I will have breathing difficulties. They sent me 20 pages of no no's.

   

Well we put some of the bags in the car already and I got the house cleaned and wash done.  Getting the trash together [a neighbor will put the can back in our yard].  Water the plants [Marcie will stop buy and check them mid week - the ones on our yard and on our front steps]. Talked to the mailman.  Such a long list.

 

till after the slice and dicing, barbs


p.s. I am trying to Think positive!!!!!! But sometimes my mind wanders in a not-so-great-place.   

 

5-15-03

Thank you for your good wishes - the angels did carry me thru the surgery so
now we will see what God has in line for me next.

The news was not what we wanted to hear at all......the tissues Dr. Kaiser
took out were all malignant and probably part of the original cancer.  So
much for hoping it was an infection or aberration.   We don't know how they
grew so fast since Sept. when I had a normal scan.  They say if is part of
the aggressive nature of Thymic, and we will continue to pursue what options
we could have. Which are not really any, according to all the drs. we spoke
to. But first I have to recover from this operation.  It is hard to talk
because my lung capacity has been reduced  greatly.  They took out part of the top and bottom lobe of the right lung and all of the middle lobe - pretty extensive.

We can not believe it!   Tuesday, through the night to Wed. morning, they
overloaded me with narcotics [which gave me an itch and slowed down all my
systems so much] and anesthetics and all I could do was sleep and I had a
temperature and a million tubes and bags and canisters attached to me. This
morning the Fellow came in and said do you want to go home this evening.  I
said not really - I'd rather wait till tomorrow. I felt like a dead fish in
the market display case.I had a private duty  nurse all evening applying
cold compresses to my head and arms and was so surprised.

 

Little by little they removed the lines in me.  The epidural in my spine was
very painful and it may have caused the fever, being an irritant, a foreign
body. It was painful to lay  back on it.  Then they took out the chest tube
which was the size of a hose...totally hughmongous [it had been leaking
anyway].  Wednesday they took off all the telemetric monitors on my chest and
stomach [that info was fed to a computer that they watched].  They caused
hives under each of the electrodes. No one believed all my sensitivies till
they saw for themselves.  I brought a list with me but they thought I was joking.
The I.V. got infiltrated in my wrist and finally after my last antibiotic pack, they took it out.

As the drugs stop, I felt more awake and could sit in the chair and walk a
little so they examined the stitches and hole from the chest tube and bid me
farewell ---telling me a long list of things to look for and go to Atlantic
City Medical Center if there are any problems and hop a helicopter back, if necessary.

Penn was great, every person was flawless in my care [except one intern who I'll tell you about later---the way he made an unsterile bandage ON A CHAIR and WAS GOING TO PUT IT ON MY FRESH INCISION]. You know I freaked out.  But I got special executive meals from my ex-students' s boyfriend and he 'took care ' of our TV and phone bill.

Gotta rest. Lot of restrictions, mainly can't bend or use right arm [even a piece of paper is too heavy].

 

It has been better not to have the phone ring all the time - we couldn't believe how many people called in the hospital the day of surgery.  It was loud and each time would jolt me awake.  I am having some troubles but nothing we can't manage.    We have everything -  2 totally full freezers. We had to tell neighbors not to bring dinner this year.

 

We truly have everything we need.   We have had to tell people to  please tell people not to send anything -  Anyhow, I have to be MORE careful than usual, if you even imagine  that.  I have this annoying tickle in the trachea and I can't cough so I can't appease it.  It kills me to cough so I start to lose my breath when it happens.  I had to remove ALL candles, scented soaps, plant matter [and flowers - one person still sent a bouquet which had to go] and am very careful with food [like spices and flavors].  A sterile existence for a while. Live and learn.  Lose some lung and lose function. And some have kindly sent donations to different organizations but that we had to say is not necessary - the only one  we've said is we'd totally appreciate is to our Foundation.  It is the only way we will ever be able to get help for this cancer; we HAVE to start getting it funded. I don't know how to get the word out politely. If people really have the URGE to send something, this is the only thing that can really help - we say to register for the aerobothon [even if they aren't going to come] or other choices for the Foundation.  So we'll see if this works

 

Alan is fine and just amazing.  I am happy he isn't sitting in that hospital chair all day and night in the hospital.  That bothered me most.  We both are thrilled to be in our own home again - just the colors, textures, and quiet is so more healing than a big institution. That is all that matters in life.

 

Absolutely not much else is important [so many meaningless concerns some have - the weather, keeping up with a neighbor...].

 

  We don't need a nurse.  My private duty nurse schooled us on what to do when we got home.  Our primary in Margate couldn't believe they let me out and I am not taking narcotics.  Everything is in slow motion - again - and I sleep most of the day.  My nose is bloody [from the oxygen, probably], my throat hurts [from the anesthesia tube they stick down...and I had a bronchoscopy too], and there is a lot of pain.  Breathing is hard and at times I just can't  catch it .

 

It is like being trapped when you are in there in the hospital.   The best help was ordering a private room for me again. It isn't worth any extra depression to be stuck with some types of roommates [and then they come in carrying germs or smell or bring smelly foods].  Or worse yet ---kids.  We saw many under 5 year olds visiting in rooms and they scream and run.  Just want you want when you are on the brink. We always requested it  [though they don't guarantee it because they can get filled up].  There is no price you can put on it. As with the private duty nurses.  I had to keep my door closed most of the time not to hear other sick patients' noises  or I would have freaked out so I can't imagine having to share the room with them when you don't feel good and are nervous.  The nurse was worth her weight in gold. Like an angel.

 

The only time that I felt disoriented was coming to in the recovery room.   Very bizarre feeling.

 

But you are right - it is positive - I survived again.  Shocking because I always said I would never do all of this if I got cancer.  Who knows what motivates us until we are in the moment.

 

5-16-03

I heard about Elaine.  Again, at least it is a benign issue that has a 'fix.'
Something I will not be offered.   She is very lucky. Probably she  doesn't
even know it.  Most people don't know how lucky they are. I'll feel lucky
again when I can stroll thru Shoprite and do normal simple tasks.  Bizarre
what sometimes we live for.

 

Uncle went to our favorite breakfast place today to bring me home a waffle [the owner knew something wasn't right when he got take -out and there were NO chocolate chips or walnuts ordered for my meal].

 

We are sorry we didn't get to see you at the hospital - I was thinking of hearing some poems. 

 

5-17-03

You show great compassion which is a wonderful characteristic in someone so
young.  We know people twice your age who can't seem to get a supportive
thought out.

You guessed it! ALan is my Prince Charming.  Always has been - since we were
in high school and I can only wish every woman I know can find someone like
him to go thru life with.  We could maybe try to clone him.  His is amazing.

 

 I remembered how you felt about germs so that is why I told you the bandage
story. Actually in the room ON THE WALL is a huge  dispenser of
anti-bacterial spray.  He never thought to use it on the chair!

 

Alan did tell me but I promptly lost it.  They scrambled my memory, you know, with drops, after the surgery.  Not much to tell - my back is hurting [they probably had me in a weird position during surgery].  When I woke up my shoulder was excruciating. The nurse said my arm had to be over my head for hours. 

 

Yes, it is good to email.  We appreciate the email contact - it helps more than you'll ever know.  I wish everyone used it; it doesn't wake us up or make us hear the same story being told out loud over and over [especially because it is an upsetting story].

 

 Gotta end since I am so uncomfortable and can't seem to find a place for myself,  we've had no company whatsoever; we just told my sister not to drive down tomorrow [it isn't worth it to drive 2 hours, sit 5 minutes for her and then I'd fall asleep]. 

 

5-18-03

Our major hope is through the Foundation we started. Take a look at the website and see what we are trying to do. We hope to find someone to do research.   But first I have to recover from this operation.   

 

5-19-03

The Penn oncologist called today to schedule my appointment and answer some of our questions.  We had heard of some treatments and ran them by her but she  said most likely there will be no cure for this. Each treatment I heard of, she said it was for another type of cancer [like lymphoma, or true lung cancer, etc.]   It kind of put us in that depressing place we found ourselves a month or so ago.  Her words "no cure" were never said to any of our friends with common cancers. Cut me like a knife all over again.

 

She even poo poo-ed green teas anti-angiogenesis effects.  She said the drugs being invented to starve tumors [like the substance in tea] just are not working as they'd like them to. As for a macrobiotic diet, she said it probably wouldn't hurt but there is no proof it works and it is very expensive

 

Cleanliness and quiet is so more healing than a big institution  [A SARS-free environment.]   . But I tried to move around more today - we took a short walk outside [passed 14 houses and came back].  Then Alan took me for a short ride - he needed something at the hardware store [it felt good to be among the land of the living again].  Forced myself.  Ten minutes is my best - for a short walk or sitting upright on the patio.

 

Thanks for being so sweet and offering help.  At this point, all we need are continued prayers that we don't ever have to face this again - that is more than we could ever want.   Everything that could be under control is...it is the one thing we can't control that we need help on.

 

Someone wrote me that God has his own mysterious way of  working out things.   People tell me, "there IS ALWAYS A FIRST - you will just have to be it!" 

 

P.S. My friend sent me this. "Who are these lousy misbehaving cells anyway?  And the machine is just looking at them.  Muster up all your psychic power and make the nasty little things fade away or at least behave properly."  My mind is getting tough on these little bastards. Let's try it!

 

Trying to space out my pain pills further - and there are no narcotics in them at all.  I haven't taken any of those.  They just sit on the shelf.    It is still hard to talk - I start coughing if I say too many words - and to  cough is painful.

 

5-20-03

When I'd go to different events, what I'd notice is the volume of healthy people and amazed how the world goes on and more people don't have more defects, given how complicated the body is. 

 

As for people - yes they are a mixed blessing.  I am tiring of those that call and ask how the weather is here.  Like it matters!  Then there are those Pollyanna's that keep on telling me I am a fighter and will beat this ---when the drs. have said otherwise.  I know they mean well and don't know what to say but it upsets me to hear the wrong words so often.

 

The physical healing is slow [diminished lung capacity makes it hard to talk and painful for most movement].   It is so hard to believe I never even held a cigarette, much less smoked one, and had so many tumors in my lung.


After going thru this type of surgery, I have no idea why someone would smoke and take a chance of going through this. I couldn't even stand the sound effects on the floor I was on in the hospital - from all really bad - off lung patients that DID smoke.  The choking and hacking made us keep my door closed all the time.  Their bodily noises upset me. The drs. said those who smoked had a much harder time with this type of surgery ---it is hard to imagine even more pain or discomfort. 

 

It would be nice to prove the naysayers wrong. I have to focus on that more.   I appreciate your support and you know you have mine.  We can gripe to each other. And laugh at the rotten cards we have been dealt and yet see the blessing of the people who have come to help us.  A mixed bag...

 

We love the way you think; we have to hope the drs. are wrong.  They are not God.  Once in a while we need reminding.  It is just that they look at my track record the last year and it is not good.  We see one oncologist on June 9th.

 

You'd be proud.  Today I stood in the kitchen awhile and pan-fried an Israeli orange pepper, a red one, and a green one.  Then I chopped brocco sprouts and added them.  And finally, I put some miso in hot water and blended it and added it to the vegetables .  I put it all in a container and can used some each day in different foods we have...can't get more macrobiotic than that, right? 

 

Will there ever come a day when we have pleasant topics to talk about.

 

5-21-03

We tried to return to a little normal so  Alan and I drove to Smitty's and I stayed in the car and he picked up a wrap.  We went to this little park on the water [the ocean, actually] at the base of the new Longport Bridge and ate them.  That was a good excursion for both of us.  The scenery there is very uplifting.  Of course it tired me out terribly for the rest of the day but I wanted to do it.

 

I think my life awake is actually calmer than my dreams.  Once - when we first moved into this house - I was sitting on our window seat and Alan saw a 'figure' sitting beside me.  That we took as wonderful - maybe one of my parents or grandparents, who knows?  It would be nice to 'see' someone now.

 

5-22-03

 Mentally, the news they are giving us is frightening.  We heard from the
dr. at Sloan Kettering today, that we have an appointment with July 23rd.
He said the EXACT words as the Penn oncologist told us the other day.

He said there is no cure or standard of care in my situation.  He said
oncologists do not have any experience giving chemo for thymic cancer
patients who have no evidence of disease [i.e. measurable disease on CAT
scans or physical exam].  That is called adjuvant chemo.  At this point, the
drs. explained I have NO measurable disease  [they removed what showed on
the last CAT scans or physical exam].

He also wrote that the risk of recurrence for me is HIGH, but the risk of
toxic side effects from chemo is even higher.  He said without measurable
disease there is no way [if they did figure out a chemo regime] of knowing
whether the toxic chemo is actually helping.

He further said that he wouldn't recommend chemo for thymic because the
drugs they are currently using are not reliable enough to justify their
blind use.  When I tell this to people , some don't understand a word of
this.  They can't understand why there isn't one drug for all cancers. They
don't get it -  that one chemo can wipe out one cancer and do nothing for
another cell.

We have been doing research for a year and knew this .  So that is where we are. Physically I will heal some day but mentally it is a bitch dealing with this.    It wears us both out, all day trying to explain. I used to tell happy or funny tales.  I don't know what happened.

 

As opposed to the kind and caring people that call,  this one guy today, asked Alan how I am  so Alan was starting to tell him about the oncology opinions.  This guy changed the subject to something trivial which minimized our agony.  We hate talking to people like that. So we cut it off. 

 

My old professor  emailed me that I should be seen at the NIH or NCI.  It is hard to believe that for over a year now, we have been hearing of the NCI and the NIH, but only in the research setting.  And web site info.  It has been impossible to get any info from them anytime we wrote. It has been impossible to get certain researchers to answer us so we gave up.

 

We had no idea, that patients could go there - it is almost like a country secret [like Camp David ].  If it is in the realm of possibility to actually take my case there, we'd love to know.  Did you ever hear of anyone going there?

 

I feel like today I started to wake up a little more, but as the anesthesia wears off, so my back is hurting more.  I called the surgeon's office and they weren't concerned. It is my right top back below the shoulder.   They just tell you to take more pain medication.  I am taking it a little closer together sometimes.

 

After ALL of the above,  one caller today told Alan today that maybe they can give me ''a less strong chemo so I don't lose my hair like " her friend.  We don't need this now. People just don't listen...or absorb.

 

As for Phyllis, you really don't have to mention her to me again.  She has let me down and I won't let myself be set up again by the same person.  There is no excuse after this latest siege.  Having needed support since the 12-31 scan and receiving no contact from her, there is no place for her now.  I tried emails and calls and really......enough is enough. My support system here [and across the country] took over and these are the people I need to be in touch with and send emails, etc. 

 

5-24-03

The dr. was right [he was in the current issue of Phila. Mag. by the way: p.91 if you have it] - there is a lot of pain involved in this.   Dr. Kaiser reached my lung by doing a muscle-sparing thorecotomy.  He went in from my right side, from under the armpit and down - like a 5-6 inch incision: supposedly they went in between the ribs and didn't have to break them or cut them but seeppparated them. OUCH.   So my back, side, breast and chest are in excruciating pain from even this 'microsurgery.' 

 

The mental pain, which will be here forever,  though,  is worse than the physical, which will heal eventually.  Even though we try to think positive, the odds are not good.  Nothing like brutal honesty.

 

So to answer your question about visitors.  We are not good company...mentally.  I freaked out when someone started complaining about the weather to me.  How anyone could expect sympathy from me over a few raindrops, when we are living this existence, in the house, like mushrooms is beyond me.        

 

It feels better to get out and do things.   A neighbor called tonight and asked us to come over - they were bbqing.  We had already eaten but we walked over after awhile and just sat and talked with them and their company [2 couples we know from Margate ].  It felt good to be at a normal gathering. My back was in a painful spell so I had to keep popping up and walking around.  Then I'd alight for a few minutes and sip some tea they made for me.

 

Get this ignorant remark; Alan answered someone who called and asked how I was.  He said my back pain was intense at times and she said, "well, maybe it is because of the weather." DUH!  I hate this minimizing merde where they can't acknowledge the real issue.

 

5-25-03

Well this morning we walked over to that annual memorial day brunch, in Longport [Big Ted Rothman. ]   The walk was less than a few minutes and  we got our food before the crowds came, and went across the street to sit in the gazebo and eat it.  It was our own private brunch room One by one, some people [including our Mayor and his wife] we know came over to say hi to me.  But after an hour it was just too damp to stay there so we walked home [it is only a block on 36th].  But it had tired me out so much that I needed to sleep for 3 hours in front of the fireplace, after that.  At least we went.    We left as the mummers were marching down the street.  The pains in my right back and side and breast have not abated and on top of that my neck was being a real killer today too.  Very stiff and hard to turn.    I  changed my clothes 3 times to find something that didn't hurt me.  Usually  1000 people show up.

 

It is very hard to explain but I push myself so the brunch at Ted's had been on my mental list of spring things-to-do and to me, it is extremely important that Alan keep up the normal routine.  It is all sad enough as it is most of the day and night and if we get out to do some 'normal' activities, it makes me feel like he isn't living in a 'sick house'.  So  when I can, we go about doing the things we always did.

 

 A lazy day - read the paper and picked up a Little Caesar's pizza for dinner.  That is our favorite type and since we got a Kmart, it is easy to get them since Little Caesar's is in there.And they have this ridiculous special of $5.00 per pizza.  Pre-inflation prices.

 

And this weekend got kind of out of hand since so many people were down from PA.  After 2 hours of CONSTANT 10 minute visits,  I had to go in and to to sleep for 4 hours. It was too much.  We don't have people in the house but on our screened in patio [heated].   It has been in a delirium since coming home.  I can't talk long without getting out of breathe yet.

 

5-26-03

Now I am doing better going up but until the other day, I'd have to rest every few steps and at the top it would be hard to catch my breath.  I sure miss my lung lobe.

 

Since most of my clothes are so hurtful, today I sat at my sewing machine and cut, for example, the sweatshirt necks down into a 'V' and hemmed them.  It makes them wearable now.  I did this with some nightshirt tops too.  I was proud of myself that I thought to do this.  They are perfectly good items but killed me at the spot of the neck incision and radiation.

 

I feel like today I started to wake up a little more, and sleep less [unless
I do something out of the house] but as the anesthesia wears off, so my back
is hurting more.

 

No matter the weather in this house.  The raindrops are so soothing to watch
from my own sofa.  Two weeks ago we were in a hotel room waiting for surgery
and having no idea when I'd get home. Any moment doing something normal is a
gift now.We had to get a gift certificate today, so I accompanied Alan on a
ride to the Taj Mahal Casino so we could pick it up.  One direction, it was
so bumpy.  But at least I got out. The worst part was walking thru the
casino to the store.  The cigarette smoke nearly killed me - I had to hold a
cloth over my nose and mouth.  I have no idea how so many people work in
those conditions.

 

5-27-03

--Hope  all the money they are spending on other research, pays off ---it is taking them too long though.  How can they be so close, yet so far away from more humane treatments.  Here they are sending billions to rebuild iraq and people here suffer from the worst disease ever.

 

We are not sure what time you dropped by.   Before the weekend many people [like about over 3 dozen ALL emailed or called that they wanted to see me - people from here, people from PA.].  There was no way I'd be able to see this many visitors. 

 

 So we chose very carefully who we said could come and WHEN.  We figured probably I can prop up for about 10 minutes  on the patio for a short spell    but we didn't expect 10 minutes to turn into 15 or more , then another couple drop by, then another, for 3 hours. All in a row.  It was just too much so I had to go in to sleep. I was totally exhausted  and in pain from trying to sit and breathe and look interested thru all those 'short' visits.

 

Imagine this - almost a whole day and no stupid comments.  But Alan went out to do some errands and I  did something I usually don't do ---I fell asleep to awake in a delirium at one point because I heard the doorbell and loud knocking.    I was on the 3rd floor resting after my longest walk and couldn't do the steps [I get very out of breathe still]. 

 

 At one point I thought I'd go to the window and open it to see who is there but gave up because I can't lift it up - I am not allowed that amount of poundage yet.  No straining to the right side is allowed. It was very frustrating. Then the phone rang [it was the visitor but before I got to it they hung up].  I found out later who it was.  She decided to 'just drop in.'  I truly hate when people don't call first, even if I am well.  She was just so sick herself, you'd think she' know all this.

 

Once she told me she 'dropped in' at 10:00 in the morning on a dr. she worked for at his beach house and didn't get a cordial welcome from him and his wife...  DUH!!!!!!

 

Alan  used that time I was sleeping to refresh his mind and go for a short ride on his motorcycle.  I am glad he got it because he comes back exhilarated , which he deserves and needs. 

 

This weekend just got kind of out of hand since so many people were down from PA. and we will not do this again.   After  hours of CONSTANT  visits,  I was so out of it and had to sleep for 4 hours. It was too much.   

 

Then one time,  after I woke up, a neighbor called  and asked us to come over.  They are just across Ventnor Ave. and I felt like the tiny walk would help my lungs.  We were hoping to see you Sun. morning for that brunch I told you about - I saved a bit of my energy for that. 

 

We were glad to spend time out a little bit and are grateful to know such caring people.  We are having some hard adjustments to make - in our thinking.  Though we try to think positive and hope this was the worst of it, we were at this same point last year.  We thought last year's surgery was the worst and then we hoped the radiation was the end of 'the worst' so now we pray that this surgery will be the end of it.   Now we don't get our hopes up because it is that much further to fall.  Many have suggested I try Seashore Healing Arts for learning how to channel meditation or do yoga or reiki. Even our rabbi is doing that [for his leukemia].

 

5-28-03

IF YOU Don't hear from me, it doesn't mean necessarily that anything is wrong. SO don't worry prematurely.  It can be one of so many things these days.  Sometimes I just can't sit at the computer - either my eyes close or I ache too much to write.  And since we are getting about 60 emails a day from well wishers, it is hard to keep up.  So we try to answer each one in order - chronological order of when it comes in, to be fair.

 

But today, trying for normal, Alan drove us to Rita's water ice and we got a gelati - I felt like I was a queen.  The best dessert ever ---cappuccino and chocolate water ice laced with vanilla and chocolate custard.  Each day we try to do something like that.

 

SO let's get even angrier ---on the news last night we heard they are sending $15,000,000 to Africa to fight AIDS.  It infuriates me since so many people in this country have such bad HMO's that they can't get health care.  A lady I know is dizzy and needs an MRI and her insurance won't cover it and she can't afford the thousand dollars and we are sending money overseas????????????????

 

Someone told me they were at a seminar from Sloan Kettering and it slipped out, kind of, that the cures are there but the gov't is holding them back.  Cancer is such big business that if they cured it, an entire industry would collapse.  This better not be true though unfortunately, in my deepest heart, I would believe it.  Look at the hype for statin - giving, for example.

 

What a way to live.  Yet so many people do this.  It is a help that times have changed and there is a lot of different help out there besides compassionate people LIKE YOU that help get you thru.

 

5-29-03

Yesterday I tried a reiki massage - it alleviated a lot of pain for awhile.  It helped me in a lot of ways.  SO many people encouraged me to do this - have  you  tried it.  I was skeptical at first but when she was done and had me sit up, I coughed.  It was my first real cough in 3 weeks - a full cough - since the operation and I HAD NO PAIN.  SO now I am a believer.


The reiki massage was such a nice surprise.  I wonder how it works.  We know it is thousands of years old. It was a relief to feel somewhat better, all of a sudden.  Even my mood was brightened.  She opened up my major chakras et voila!  She told me to envision all of my cells with happy faces on them. Today, though, I was very tired and achy again [but I did go to the supermarket with Alan - that is a lot of walking up and down those aisles].

 

My arm is decent - I don't lift more than 5 pounds, as per their instructions.  Tomorrow we go up to PENN to see the surgeon and will see what is next.  It is my back and breast that are hurting a lot now.  I sleep ok except when I stir or wake up, my mind is very pre-occupied on not-nice thoughts about the future. Daytime is better.

 

Last night, I didn't have that after the reiki so there is much more than the traditional medical model.  With luck one day, we hope to find that one 'brain' to tap.

 

Next week Alan gets one of the massages.

 

She sent us a link today for a company called Norvartis that developed Gleevec, the miracle drug that can put a certain type of leukemia in remission in 2 months.  We know someone on it and for 2 years he has been in remission and working full time [no side affects at all with the drug].  Anyway, it seems as if it may be useful for other types of cancers.  The news is being unveiled May 31st at the ASCO  [American Society of Clinical Oncology] meeting in Chicago

 

Coincidentally,   the oncologist that I got at the Hospital of the University of   PENNSYLVANIA   will be at those ASCO meetings next week.  She will be shopping for a miracle for us. I have an appointment with her when she returns.  May everyone's prayers be working.

 

5-31-03

Today we took what was supposed to be a short ride to Appleby's to pick up one of their Chinese Chicken Salad bowls.  There was so much traffic - bumper to bumper.  First yesterday in Phila. coming home and here today. There are way too many people on this planet.  The traffic used up all of the time I could sit bouncing around in the car  so we only made one stop.  That was annoying because we had hoped to do one more errand. 

 

On June 6th, we have to be in the Northeast at Fox Chase at 9:00 A.M.   We may be done there about 11:00 I figure, if the waits are reasonable, if either of you is around.

 

On June 9th, we have to be at the Penn oncologist [38th and Market] - I misplaced the time [either 11:00 or 1:00 ].  

 

The visit to the surgeon yesterday was long but a friend or two stopped by to keep us company - first I needed to get a chest ex-ray [which he later told me was ok].  We were there 4 hours total.  Much waiting.  When we finally saw him he said he couldn't believe how soon I was able to leave the hospital.  We learned how extensive the operation was.  We had no idea that the 4-6 inch scar is only the tip of the iceberg.

 

Once inside, they needed to cut about 24 inches around, from front to back.  Now that explains the majority of my pains.  From my right side, to my center back is about 12 inches and then from my right side along the front [parallel to my breast], they had to cut another 12 inches. He wants me to take it easy a few more weeks and see him in 3 months, after getting a CAT scan.  They think it is  healing properly, so that is good.

 

His office is practically all lung cancer patients and it makes one think.  Many are end-stage.  In wheelchairs and on oxygen and very thin, bald.  I did not like being around so many sick people during our time there.  It was very depressing to see this.   

 

 Today I started to wake up a little more, but as the anesthesia wears off, so my back is hurting more.      I tire easily and really don't want to be around a lot of people, for fear of catching something.  I am barely breathing now so if I caught a cold, it would literally kill me.

 

We just have to be grateful these days for small things - even that I can do a little on the computer.  It diverts my mind from the pains.     We are happy just to sit and hold each other or walk around the block.  Don't need much else in life, really?  We have learned a lot from this.  Like Dorothy in the Wizard of Oz ---'I found my heart's desire in my own back yard.'

 We spend a lot of time  reading  materials Alan printed out from various sites, which is further depressing. We are trying to figure out how to deal with 'life.'   We do sit on the patio a lot and are glad we added that on.

 

6-1-03

 

According to my original timetable, this month Alan and I were going to do a lot of publicizing the Aerobothon. But now I am a sluggard so the only one  thing we'd appreciate is to tell people to support to the Foundation.  It is the only way we will ever be able to get help for this cancer.    Everytime Alan brings me a registration form, it is a boost.

 

We have been reading of so many promising technologies, like Lymphorad - where a little radiation pellet is sent thru your blood stream to target only the cancer cells.  Of course I was told it is only for lymphoma now.  Then there is the  'death star' [p53], a gene that purges defective cells.   We also read online at the Fox Chase site that Dr. Treat is using liposomes- fat balls that go thru the blood and target only cancer cells.  Would any of these be useful for my type of cancer - who knows?  But at least we have a list to approach them with.

 

Last time we were at FCCC, while we were waiting to go back, we sat with a woman and her husband - she was getting chemo for breast cancer, I think.  I was amazed how she had been going there for years and absolutely loved it and everything about the place and her drs.  I never expected to hear a report like that after all we talked about.  She had been somewhere else first and it was not a good experience so she and her family chose FC.  We are mainly coming up to see what ENgstrom's tumor board arrived at.  SO we have some basis for comparison when we go to Penn and Sloan

 

  HOPE EVERYONE'S PRAYERS  will lead to someone, somewhere finding a medicine that will perform a wonder for me. Your prayers are working - I am starting to have less pain and stay more awake these days.

 

You'd never believe this but my neck incision site and area of radiation still hurts me worse than the new place.

Today we went over to the flower show on the ocean city boardwalk [it is indoors on a pier over the ocean].  We always enjoy the view as much as the flowers - today was very uplifting being there.  We watched surfers while we enjoyed orchids and bonsai. Friends from
Margate met us there and afterwards I actually still had energy so we walked a few blocks on the boardwalk!!!!!! Got an Aunt Annie's pretzel.

 

One of the most annoying problems I have is I get a tickle in my throat often throughout the day and night.  Other than drinking water, not much else subdues it.  I hate to start with cough syrups yet.  I did have it before the surgery [I think the lining is still trying to recover from the radiation] but it is worse now cause it hurts to cough.

 

6-2-03

Unlike the surgeon last year, he doesn't put me onto the path I should follow next; he doesn't get involved.  He just said to see the oncologist.  It was very depressing to see his other patients.   

 

It made me think that I don't want to do that, whenever that time comes. Dignity.  It felt so good to get on the road home, even though we were in a bad traffic jam for an hour trying to cross the bridge.

 

I think everyone winds up like 'them' unless we luck out and die quickly in our sleep [like my 2 grandmothers] or a heart attack [like my father] or an accident or terrorist attack.  Eventually the parts wear out and the body just can't go on and in many people, the deterioration is slow, and fraught with so many symptoms from each bodily system. Each person has to decide when they have had enough of the pain involved with extended health problems.

 

Like you, we like comedies.  That is all I watch.  You are right that laughing is good medicine ---you know my great grandfather was a vaudeville star [and gave w.c. fields his first job ---it was in the 'Whoot' this winter].

 

Today we did some work in our yard; Alan unwrapped the tarp from the fountain and I took the hose and watered some flowers we put in pots.  We put the pots around the base of the fountain.   A few neighbors walked by so it was nice to be outside, for a change, and chat. 

 

Then we took a little walk since the weather held up.  It was a bit cool here - enough to need a jacket. For a few blocks we walked on the beach but it is hard to navigate so we got off.

 

Even had the energy to make spaghetti and meatballs for dinner [of course the meatballs were formed already and frozen from a month ago -I had planned ahead].

 

6-3-03

We know how you  felt - it is very difficult when you are down to want to talk to anyone.   A lot of people have a way of upsetting us. Yesterday a guy called up, did not ask AT ALL how we are - he immediately went into an entire soliloquy on the building they are constructing at the beach.  Meaningless. Then he asked Alan to go over to his house today and take his trash cans in after they collected - he said since the whole family was down, it was too much trash to take home.  And that was that.  I wouldn't ask someone with a cold to go out of their way, let alone something like this.

 

Then another one called and started complaining to me about her husband's cough for 15 minutes; I didn't say a word.  She kept on debating to herself that it must be an allergy and blah blah blah.

 

Tomorrow, a group of women from Margate and Longport are having a book meeting and they are reading Alan's book "Type A".    We were so honored they chose his novel for this month's selection.  They asked Alan to come [so they could  meet the author].  They asked for me to come, if I can since he modeled the main character after me.   SO I will try for a while. SO I did make it - it was fun.  And beautiful. It was at our friend Sandy 's house and it is on the beach [at 36th].  The view was mesmerizing.  It was hard to concentrate since the ocean and waves were the backdrop.  The ladies asked great questions, though, and Alan explained a lot of the thought that went into various characters.  And Sandy had fabulous desserts set up.  She is having a lot of side affects from her chemo and radiation and doesn't feel good at all.  She and I are our own support group and she told us yesterday not to take chairs to the beach ---to use hers on her deck.

 

Thanks for all your good wishes.  Each and every one helps, I have to believe in the force behind everyone's prayers. We are grateful you included us in your synagogue's prayers.  That is the most wonderful thing anyone could do - it is interesting how in life, you get to a point [THIS POINT] and need nothing at all but your health and life,  so any means to get it, is the most important thing in your life. We strongly believe in the power of these prayers. That has been our blessing thru this - we are learning there are such good and kind people around us and they are who we want to be around.

 

On the other hand, there are some people I don't ever want to have to see again - like your cousin Jeff [in a year and a half...not a call or card or note ...nothing].  I have an uncle like that too [my mother's brother] who has not contacted us in any way.    It is healthier and imperative that we remove this type from our lives. There is no way they can re-enter at this point of time when they knew the scoop.

 

6-4-03

Mentally there is so much on our minds, that it is meaningless to think about the weather or plan to go to the beach.  And I have been too in pain yet to go to the beach.  Maybe the next nice day we will try for a half hour, now that we don't have to lug anything ---I am not allowed to carry anything yet [over a couple pounds] so I can't help Alan tote all the crap down there [not even a bag can I carry] but Sandy is an angel, making it much easier for us now. She said she would bring the chair down to the water for me.  So all I have to do is walk down our street. So we will be on our Longport beaches from now on.

 

The reiki person I used last week was Kathy Smith at Seashore Healing Arts.  Thank you for Adria's number - I think I will try her too, to compare.  If she specializes in cancer, it may work even better.   Mal Hollander also recommended her. He's Dr. Hollander's husband - she is another oncologist [in Galloway ].

 

I don't even know what to say - people tell me to tell the bastard cells to go to hell, or to muster up my psychic powers and will them away.  You and I know it is not that easy.  SO we will resort to our intimate prayer circle and maybe together we can do it.

 

Happy you know how hard this is [Alan said when you go thru something like this, you can really get a glimpse into people's hearts and souls].  Some have said such stupid comments to us that I have to put distance between us. 

 

Since the surgeon said I could walk on the treadmill and the weather outside wasn't meant for a stroll, I went to the gym 3 times so far and I did 1/3 of a mile on the treadmill [I have to keep my arm immobile by my right side though or it is very painful ---it drags down on the incision].  Today I went up to a 1/2 mile!   Progress.

 

6-5-03

What used to seem important is so meaningless now - life takes on a new perspective.  Compared to health, there are no problems, like the  weather.  As long as I wake up and see Alan's smiling face.   We are in all day most of the time anyway -  well you remember from your foot surgery.  And often we are just tackling the insurance problems, appointments, gathering information, and trying to adjust somehow.   Luckily we have the patio and can sit there and enjoy the raindrops.  People don't understand how little importance weather is to someone in my mental state [we are very numb] right now since much of what I have to do each day is inside and determining my very existence.  I appreciate going out for a nice short walk but if I can't because it is nasty, it is ok. 

 

The doctor mentioned in the article, Patrick Loehrer, Alan actually contacted him a year ago and they DO correspond.  He is the expert  but unfortunately he sees mostly thymomas - there isn't too much thymic to see.  SO his work and trials are geared to thymomas.  This is the problem.

 

All of the oncologists we talk to know that the mix he uses is extremely toxic and it may be of some value in thymomas [he's seen more than any other dr.].  But the protocol is not  proven for thymic cancers. They don't know if it works at all for thymic.  Unfortunately.  It is so toxic due to the combination they choose, that most patients  can't finish the series due to extreme side affects and many of the others die at the end [Johns Hopkins did a study].  SO that is why the oncologists say until I absolutely need it, they'd like to wait. We are tending to agree.  I don't want to end up like my mother where the treatment killed her.  It almost happened with the radiation last year.

 

There has to be a better way.

 

He has given us information, which we followed.  For example, last year, he said the best course for me was surgery and radiation.  Which we did.  And he sent us an email this year too. He is a tremendously nice man and we have been overwhelmed by the medical community around the country.

 

You asked what has helped.  Alan is my true blessing in life.  He is too good to be true; I always called him my prince charming and he keeps me in an equilibrium most of the time.  It makes the whole ordeal easier to have a true love there with you.  Sometimes I think that since we have been together since our first date [it will 40 years ago on this July 23rd], and have had such an idyllic time of it, that maybe this is the 'little rain that must fall' on our parade.  I really can't gripe or complain about this because in our time together, it has been like a fairy tale [you'd have to see slides of some of our trips to believe it].  It is just life and it can't be perfect every day. So I'd never trade what we had together - not that you can bargain anyway - to get rid of this.

 

And you asked about a vacation; we did sooo much traveling [when we taught and had summers off] that we just love it here and have no plans to go anywhere.  In the Wizard of Oz, Dorothy says, "I found my heart's desire in my own back yard."  That is how we feel.  Wherever we traveled we gravitated towards the ocean.  We saw some of the prettiest beaches in the world but we just ADORE it right here and think this is the best beach of any we were ever on.  What makes it special is we know so many people up and down the beach and it is more social than just going and baking in the sun.

 

It is a new way of looking at life and health now.  All aspects of daily living take on a different perspective.  If the weather bothers the scars, I don't care that much; I even welcome it.  Because that is benign. The scars are all too new to know about what affects them; I am not used to my neck pain and numbness yet.  Benign is a good word to me, but unfortunately the drs. don't say it to me.  As long as I know the pain is not associated with a horrid  cancer, then fine, and I will live with it.  Chronic pain is ok  as long as I am alive and not growing anymore masses.  That is one struggle that I can't deal with anymore.

 

Thank you for your good wishes for tomorrow.   Tonight we took a short walk to the beach with Art and Marcie and it was so 'normal.'  I wanted to freeze the moment and don't want to come home tomorrow and have to live any other way because the drs. probably want to do painful treatments on me.

 

6-6-03

The ride up was so painful -every bit of jostling I felt in my chest and back. Once we got there, they took my blood and we had to wait TWO hours to see the dr. and Fellow. I was pacing in their hallway after 35 minutes and telling the nurse to get them in the room because I was in pain and had to go home and get my clothes off [they were binding me and creating more pain].   First the Fellow came in and we EACH pulled out our list of questions [ever prepared - actually some of the questions, our drs. told us to ask].  We kind of stumped him with a few so he had to leave - I can't imagine how it is for people that don't use the internet or resources to learn their options. 

 

The Fellow had pulled out a huge booklet to give us and said, "This is what we will put you on."  It is a phase 2 trial by the NIH and I asked how many people with thymic cancer were on it in phase 1.  Couldn't answer. He said it is for a lot of different cancers.  We know from reading on the internet site that the answer is 0. 

 

  I  asked if Fox Chase gets paid for each patient they enroll in the trial and he was a bit miffed but said they do get paid.  There lies the problem  I had hoped they'd review my case and find what I needed.  They were trying to pigeon hole me into what they got big bucks for.  Our friends were right when they told us about this months ago.

We should have made a videotape of this - it looked choreographed.  Others going thru similar could use it to learn how to deal with these drs. [AKA used car salesmen].  Then here is the coup D'Etat!  Alan was looking at the booklet on the trial and said to the Fellow, " Is Barbara qualified to be in it; it says here that you have to show MEASURABLE DISEASE TO GET that chemo."  He went out and got the main dr. to come in.

 

Dr. Engstrom came in and questioned us as to what Dr. Kaiser did to me and what he said after the operation.  We told him that he felt he got it all out.  He had the pathology report there which confirmed that. so  he said that he'd give me a script for a full body cat scan in August and see if there is any measurable disease.  So we have 2 months to breathe and meditate this merde out of me.

 

If I hadn't had the surgery, then I'd have qualified for the trial.  But after they take it all out, it is not an option.


So how long would it have taken for them to realize I was not a candidate.  Would I have gone thru the surgery for putting in the chemo port [a hospital procedure - more anesthesia and cutting, etc.].  If Alan hadn't said anything, who knows what they would have done next. Isn't that scary. It leaves you shaking.  Alan is a true blessing.

 

By the time we got home I slept for a few hours. Then we went out for waffles and ice cream.  Which we earned!!!!!!

 

Yes the new cardiologist was thorough - he gave me a card to keep in my wallet for my mitral valve prolapse - it says all the procedures you should use antibiotics for FIRST before having the test.  Then he gave me a copy of the EKG to attach to it.  No cardiologist ever did this before.  He was very understanding about all my reactions to the statins and said he'd work with me. He has a new aspirin-like medicine that he may try. 

 

Thank you for such a supportive email.  When I read your list of activities, I 'saw' me, 15 years ago.  And if you are like I was, then that was only a partial list.  Sometimes I worry that my frantic lifestyle back then may have set the stage for this awful disease - I have read how stress breaks down our immune systems and that is when these dread diseases creep in and take over.  I'd hate to see even my by worst enemy go thru this.  If you can take away anything from my ordeal, then may it be to ONLY do in life exactly what you want to do and enjoy.  Life is too short to live by lists [my lists used to have lists and sub-lists]. It all sounds so trite but the adages are true.  We had reached a point where we realized for example, that there are only so many Saturday nights in our lives and we would not spend them with people we didn't want to be with [out of duty].    Practice saying no and then do it for real.  You don't get another chance; the body is so fragile and once it breaks  down, it may not repair as easily as when we are kids

 

Your prayers and good thoughts have helped bring me through the latest ordeal. We are grateful so many were generous enough to help.   And we appreciate your idea of Gilda's Club.  It is ironic that a few months ago we went to their art auction and I wanted to volunteer to help out there.  And now I will need their services.  So certainly I would be glad to talk to Shirley.  A neighbor also is active there and she had someone from Gilda's call me too.  Everyone associated with it is so compassionate.  What a wonderful resource to have in our community.

 

Though I have heard that a frantic  life style may  set the stage for this awful disease  and how stress breaks down our immune systems and that is when these dread diseases creep in and take over, I am not holding myself responsible.  I won't beat myself up that way.  There are too many other factors.  In fact Alan said to me the other day that we had so many stressful years [ remember the city tax, the house from hell, and the college], that he feels amazed that he didn't get cancer because he was so fraught with turmoil.  He handled it all worse than me and I was the one who got the cancer.  I bet much of what determines if you get it or not,  is genetic.