March 31, 2002 to April 4, 2002

 

 

3-31-02

 

I appreciate hearing from you.  It helps so much to have this contact with
the outside world.  These days, emails are all I have since I have no vocal
cord action. It wasn't unexpected.   When we were at Temple Friday , one of
the surgeons shed some light on it all.  It seems as if the longer they need
to leave the tube in for the anesthesia, the more chance that the larynx is
affected afterwards [and I hope it doesn't last more than a few weeks. ]
Plus, mine got more abused because the surgery was in and around the vocal
cord area for all that time.   Not to mention the 9 hours the tube was down
me. Seems there is no moist air there to help hydrate the tissues.  So
afterwards, healing can be slow.

 Oh, and on top of all that, they took the 'liberty' of doing an endoscopy
first down to my stomach [a procedure I had dreaded from the beginning but
at least I was out, out and more out - and that was to be our friend, Rich
Moses domain; he had dibs on that one and never got to do it]... and then
the throat got more irritated when they did a triple endoscopy the other
direction towards the nasopharnyx and adenoid and throat.  I have been
scoped to the hilt.  As they say in  the trade.

They took out some stitches and checked out the healing and swelling on
Thursday.  I am set for a few more days now.  No biopsy results yet; they
keep you really anxious.

Thank you for your offer, we are really just fine.  And we certainly
appreciate your offer and if anything comes up, we will let you know.  I was
very organized before the surgery and the freezer is packed with our
favorite things.  For the time being, I don't do well with liquids [they cut
some muscles so that leads to choking].  Today Alan made crepes for
breakfast and we shared a steak for dinner with a baked potato.  I made soup
with matzo balls.  Basically I just nibble small amounts of whatever I want.
I have spent a lifetime of watching my diet [to no avail] and now I am
trying to recoup my 10 pounds.  My theory is everyone needs a cushion of
pounds, just for situations like this.

We made an effort to set the VCR for "Just Shoot Me'' and "Friends" and other series.  It is a time when I can sit and catch up on paperwork in between zz's.   Drugs are good in a way - these drugs are potent.  I haven't taken anything since I have been home; what is causing the problems is what they gave me in the hospital.  It seems to stay in forever. So being out of it and in a delirium is a true blessing.  You know my neck is still numb --- a week later.

Yesterday Alan took a ride over to our favorite breakfast shop by the bay [Smitty's] and brought me home chocolate chip and walnut pancakes.  With a wawa cappuccino.  I guess life doesn't get much better than that.  Compare that to the gruel the hospital served and you know, I am tickled to be back. It makes the discomfort much easier to take.  I took a triple dose of Wilbur chocolate buds today which equals SIX buds..   Matzo wouldn't go down anyway, considering the irritated throat I have.

 Alan is really enjoying bossing me around.  You asked what I am doing. Everything just takes much much longer.  And I have to rest in between.  The morning is so arduous; just brushing my teeth makes me rest an hour.  Then getting dressed is slow.  Till I get downstairs it could be noon .  After I eat, I am exhausted and have to rest.  But it is okay. I am happy to do 'slow' rather than be in the hospital.

Today we even took a slow stroll to the beach and back; it sounds like a lot but it is only 14 houses.  I just needed to move my legs a bit.

 

I really appreciated your email.  You are just so sweet. Emails like yours, make me cry.  It has been an overwhelming 2 weeks. . . . . . well, actually 2 months.  It is hard to keep up with the proper thanks to everyone when I am drifting along in a stupor, most of the day.  I had a 9 hour surgery to remove the neck mass [the size of a tennis ball].  In the process, I lost one jugular and some muscles.  And I have to add, that before all this started I felt fine; better than I had ever felt in my whole life.  I had finished a year with a great personal trainer and my body was at its best. Now I am slit from ear to ear and black and blue and green down to my navel.  Here's what it looks like [yisch]:

 

http://www.neibauer.net/Neck.jpg

 

But I am not too delirious that I am not touched by what is going on around me. People [and some I don't even know] have boosted our spirits with such support, that I never knew existed.  Prayers, vibes, happy hour toasts...we take it all.      I never expected such a volume of chocolates, flowers, gift certificates to our favorite local restaurants, and of course, one of the most generous offers of help was Bonnie and Rich's keys to their condo in case some people we know want to visit.   I am not doing company in my own house ---that would stress me to the limit now. 

 

   Can you believe all this, from a simple "feeling" in my throat to visiting Rich, thinking it was in my esophagus.  No one can believe how fast this  occurred.  We were so overwhelmed and wondering how it all came to this.  But hopefully, the surgeon got it all, in 5 weeks I'll get radiation [unless they have a magic pill somewhere], and soon I'll be back to normal.  Still waiting for biopsy reports to see if they found the origin of the mass.  Originally, the pathology showed it had neuroendocrine cells.  So if you have ever heard of anything like this, let me know.  I had to get something totally different.

 

Thanks for your offer and as of now, I am fine.  Just being home is so beautiful.  For a while, I thought I'd never get out of the hospital.  Most people are out - patients these days.  So staying a week, that meant it was pretty serious.

 

A million thanks, Flo.   Emails like yours are such a nice surprise and make my day.   And please say hi to Rose for me.  Tell her I have been missing her - she used to email more.

 

4-1-02

 

Hi Rich

Glad you're back and hope you had a good time. CR is not the only place without a Internet Cafe -- couldn't find one in center city Philly either. I figured they had to have someplace for access to the Internet so I didn't bother bringing my laptop. Couldn't find a cyber cafe  in town at all. I tried Kinko's but couldn't access my AT&T email that way, so I bummed a computer from Herb Kaufman at the Board of Ed one day.

 

Dr. Kelley said he took out a mass the size of a tennis ball, as well as an internal jugular, some muscles, and lymph nodes. She was doing okay until her left arm swelled up twice  the size and they found a clot. The vascular resident put her on blood thinner but then she started bleeding at the surgery site -- her neck swelled up with blood -- so they took her off blood thinner and put in a drain. We're still waiting for the pathology results-- maybe Friday when we see Kelley again -- if we don't heard anything before.

 

 We have flowers in every room, there are so many bouquets.  Phyllis sent a bouquet that got here today and the Levines sent a chocolate pizza.  Sherry and Neal brought me a long black feathered boa to wrap around my scarred neck [when it heals - nothing can touch it now]. And of course, you get the merit badge for poetry reading.  That was wonderful; I didn't have to talk, just listen.

 

Our friend, Bonnie Moses had told me, before my horrifying adventure, that she thinks that everyone is a cancer patient in a way because of the high percentage of how many get it these days [supposedly it is one out of two people].  But she said that they just don't know it so they can't evaluate their life and make improvements and decisions to do priorities while they are able. So if I have another chance, I better start getting more organized here.  And a few people have told me that from my experience, they are
already making changes in their lives so maybe some good will come out of this.

 

 Most of the time I just lay around, like a lump, snoozing into delirium [ask your friend Eileen if she had this experience].  Everything just takes much much longer.  And I have to rest in between. 

 

4-2-02

 

We appreciate you thinking of us but it may be too soon to have so much of a drive and activity out.  I don't want to hold up any of your plans for the 14th, so please make your arrangements and we will all catch up at another and better point of time.  When I can enjoy the outing.  Everyone has been too wonderful to me and it truly shows the best side of people.  We are just so touched by it all.  When we went up last week to the dr. at Temple , the drive alone was enough to put me in a stupor and to bed the rest of the day.  We did not stop to eat on the way up or back; walking to the office was all I could do. And shakily.

 

This Friday we are scheduled to come up and see the surgeon in his Jenkintown office, [to possibly drain my neck of the dissolved clot materials.  And we also go back next week one day to see the vascular team and possibly another day to see the surgeon again.  

 

We had another invitation that we knew about 2 months ago, for the 13th [a gala dinner dance in Freehold] that I know realistically we won't be able to attend. It was disappointing owning up to the fact that we aren't going.  It was one of the things I thought about to get me thru this. I can't stay up past 8 or 9 most nights without a lot of dozing off.  They are very worried about me hemorrhaging again so I don't want to borrow any more trouble.  I'd be better off taking this slow. They need  me to heal thoroughly to start radiation, also. 

 

Each day, here, gets a smidge better.  Most people have no idea what surgery does to people. . .  you can tell just by the emails or questions they ask on the phone.  

 

I still have no vocal cord action. It wasn't unexpected.   When we were at Temple Thursday , one of the surgeons shed some light on it all. 

 

4-3-02

-         took the 'pizza' back and got dark chocolate covered pretzels instead and
a box of fancy tea sugars [little sugar cubes decorated with colored icing
in the shape of flowers].  Yes I do have a  sweet tooth!   And all my
'advisers' say it is not good since sugar suppresses the immune system and
right now I need mine working overtime.  Damned if you do and damned if you
don't.  Oh, well.

That was a coinkydink about your other coconut encounter.  That is
interesting how you developed a taste for the stuff.  It makes me gag.  I
don't like the texture.

The neck is still swollen with blood and some of the now-liquefied clot materials and the area is numb. There is some trouble drinking but  eating is better and just so happy to be home.  Alan took me for a short ride today; we wanted to get bagels and it felt good to get out. I even walked into the bagel store and pointed to the ones we wanted.    My neck scared the shit out of the clerk  -  this is the fun part, freaking people out.  Hard to believe that was such a big feat...coming from someone
who used to be able to do a kickboxing class.

Being anxious to get back into a normal routine and the kitchen already, today I  made some boneless chicken tenders for dinner tonight. But it had to be done in small steps. And Alan went back to the gym tonight to take the kickboxing class, we like.  He came back with a card that everyone had signed for me. These seem like little things but they mean so much. 


 We also received a basket of flowering plants from our neighbors [that aren't our neighbors yet - they will build a house on the lot on the corner, next to us].  She, Ann, called Alan the other night and said how my illness really affected them.  They have been agonizing over building their house
for over 2 years and nothing is done yet [which is obvious to anyone who drives by].  She now sees how insignificant  a lot of the details she was exacting are, and she sees how short life can be.  I feel good if 'this' all can help someone.

Hospitals are a lonely place once your family goes home for the night [I am so thankful that Alan got a cot and stayed in the room 2 nights with me]. And hospitals are frightening, if you are out of it and can't watch over your own care. We arranged private duty nurses for me for most of the days
and they were a treasure.  Except the one who decided to eat dinner in my room [spicy cabbage and kielbasa - need I tell you how it smelled to someone just coming out of it].   That was the night I was hemorrhaging too. And the residents were in and out and so was I...of consciousness.  That was the
night I thought I'd die - did I tell you this already.

Phoenix Barbs

 

4-4-02

 

Thank you for including me in the special healing prayers.  All this help will get me thru this and what is to come.  Everyone has been too wonderful. The best side of people comes out; we are just so touched by it all.  We don't even know how to address all this support and will have to think of something when I can think clearly.  We have never been in a situation like this before and hope never to be in it again.

 

It was soooo nice to hear from you.  We heard from a lot of people in FL. this week that it was warm.  We are glad you had fun.


You  are the real friends; you have been here since the beginning. That is most important to us.  You have seen the whole struggle.  Thanks so much for your thoughts and prayers.  It all works, I know!!!!!!I AM STILL HERE.   One of my private duty nurses helped in that regard too; she was very in tune with positive thinking and we had some sessions off and on while I was in my delirium. Someone wrote me that God has plans for me and this is my workout first. Words like that got me through. It became a
mantra.

Alan is really enjoying bossing me around.  I am too tired and weak to even
argue. I am content just to sit, with or without the TV on, or with or
without a book.   You're right, Alan is a pillar of strength and so loving
throughout this whole ordeal.  He should get a medal.  The morning of the
surgery was no picnic; the operation was 3 hours late and I just laid on a
gurney by myself.  If I had had trouble with English, Alan could have been
there with me.  Like the Indian lady next to me. She had her daughter by her
side till they took her. Where is the justice; that was one of my few
complaints.  Finally, about 15 minutes before the end of the waiting, I
insisted they bring Alan in.

I felt so bad for him.  He sat from 7:15 till 8:15 that night till he could
see me again. Of course people were with him, thank goodness.  And the dr.
would call him with updates.  But I just felt terrible for him - his routine
reduced to sitting in a chair in a hospital room [watching me blow up from
the clot and then hemorrhage], the feeling of helplessness, and so stressed
out.  That is what bothered me most - how Alan sorely needed more rest and
less stress.  It will affect us permanently.  I hope the radiation
treatments go better than this.

 I think I am in a semi-sleep most of the day anyway.   I am not too
uncomfortable or in pain [my trigeminal neuralgia in my face is worse pain,
can you believe] - just very fatigued; the dr. said the nerves in my neck
had to be cut to get to the tumor so it is all numb [that Novocain feeling
after the dentist].  He did say that the nerves should grow back.  Let's
hope so; it is a very weird and strange feeling. I gave myself a paper cut
because I couldn't feel the paper moving across my face.

Most of the time I just stare or lay around, like a lump, snoozing into
delirium.   Yesterday I walked a few steps in the garden. Today to the
corner and back.  I hope to walk to the beach tomorrow.  It is only 14
houses away. Hahahahaha.  Hey, where's my rolling chair?  I am trying to
force myself to do something each day.

It is a slow tedious, monotonous thing, my recuperation.  Speaking of which,
it is very complicated since it involves each of the 11 systems of my body.
Every organ had to be affected  by the surgery and then the clot and
bleeding.  My left breast is purple and turquoise - the blood seeped down
from the neck. 


In the hospital my private duty nurses were a lifesaver.  I was hooked up to
a suction drain [in my neck and shoulder] to remove the blood from the
hemorrhage, plus my feet were wrapped in those ankle to knee 'circulators'
so to get out of bed to go into the bathroom, I had to be unhooked and then
when I came back again, I had to be hooked back up.  I could barely drag my
old bony ass off the bed, let alone do that other stuff.

 It is a shame I can't talk on the phone - it would pass the hours, since I can't do much else at this point.  They took out some stitches and checked out the healing and swelling.  I am set for a few more days now.

 

Unfortunately, this won't be over for months.  I'll be staying away from
people hacking and sneezing and crowds because I can not take a chance of
catching anything till this is all over.  We are starting to get invites to
engagement parties and weddings and the like so   I better be my old self by
then, unless the radiation affects me severely.  That is what is on the
books for now; we still await biopsy results.

 

Your package brightened my day.  That was so thoughtful and we love the
entire contents.  We have never seen a night light like that; it is
exquisite. And we had none but when something like this happens, you
suddenly find out you need one.

 

Thank you for the program you  made up for me.  Each day I try to do
something on the sheets [without weights - like the 21's].  It is exhausting
but I feels good [I keep telling myself it will push the toxins of surgery
out faster].

Yes, I pushed Alan out of the house to go to the gym. He traded in his
'nursing' outfit for his kickboxing uniform.    I want life to go back to
normal, a little at a time.  Just being out of the hospital is a major help.
Can't wait till it's my turn to come over.The thought of getting back to
class and the routine you mapped out kept me going in my delirium in the
hospital.

I have a lifetime of stories now [---as I didn't before].