This
was the most nightmarish week we can ever remember, with that 'ovarian mass'
scare, but of course, we didn't know that until yesterday, so it had to be
taken seriously. When my gyn's office [Dr. Wu] first called me
on Tues. morning, the girl, Nakisha, said I was scheduled for cervical
surgery on March 14th. We flipped out; totally not expected. Of course
Dr.Wu was not available and we spent a nerve-wracked day.
But your wonderful husband called for the results and then called us today and said the results were good; the cancer is localized in my neck and that no other areas 'lit up' . That really took a big load off of our minds and now we can go forward; event though the surgery is horrible, this makes it seem more realistic that other areas may not be affected.
The positive outlook is so important, you are right, though it is tough as
hell. Now though people mean well, they are just so stupid. We
got one email - all in caps - and she wrote that I should RUN, NOT WALK TO
SLOANE KETTERING IN NY IF YOU DIDN'T HAVE YOUR SURGERY YET. Then her
boyfriend sent almost the same one, a few days later when we didn't answer
her. Alan sent an answer [too nice though, as far as I am concerned].
We
try to do something 'normal' everyday so I made an 18 pound turkey and we
packaged it up so when we get me home from the hospital then we will have
some good healthy meals in the freezer.
We
also started to plant some lily bulbs today and a peony and some phlox and
cyclamen roots. We even felt psyched enough to go to our favorite
kickboxing class twice this week. Trying to stay normal. And
calm. But my inners are so nervous.
I
almost forgot, In answer to your question, we are looking for nurses at
You're right, we are so mentally exhausted that it is easy to fall asleep most nights. It is hard to go through so many varied emotions all day, over and over. I could never have imagined ever finding such a span of thoughts inside my head. Even though it was good news Thursday and Friday, in comparison, I am frightened of how I will wake up after the surgery. Intensive Care strikes a scary note. It doesn't help to get negative emails from a few clods, either.
Everyone
else is so wonderful, though, that it restores your faith in people.
One of our kickboxing instructors said, when I am ready, she will walk on
the boardwalk with me... another said she'd bring things to the beach that
we could do [like those huge rubber bands].
When my friend Lucille had her mastectomy, an aunt said to her at a wedding,
"Why are you still alive and my daughter isn't."
My former student Gail told me it started with her from the very beginning. We'll write a book one day.
You
got to talk to Uncle Harvey. No, we didn't know that - I wonder what
his tumor was in his neck; that is too freaky. Did he happen to say
what
his was [like thyroid or some other growth]. This kind of thing has got to
run in the family then! You are a good sleuth. You have a new
job.
Anyway, I spoke to your mother this evening and I suspect
curious for more details so he called her. And then he called other
family
members [like Gladys]. SO then Gladys called your Mom. Our tiny
family is
now informed. You did good - the fact that he remembered
it might be lymphoma both times is very informative.
Today
we drove up 2 hours to get to
pre-admission appointment. SO when did they take me? At
after I went to patient relations and bitched my head off. The
head of
pre-admissions came out to see why I went to patient relations and I told
her how long we were sitting there. Then we were taken right in and
saw the
physician's assistant and anesthesiologist. With what I had to sign,
they
scared me even more than I already was. If that wasn't bad enough.
Plus
the anesthesiologist did not paint a pretty picture for how I would be when
I woke up - maybe a breathing tube in my throat in case my neck is too
swollen from the surgery. I gave her my living will and she said no
one
ever did that before??????
You
are right - I have to not give up over temporary swelling. You are
good! Brought me back to my goals. But I forgot to tell you that
the
anesthesiologist told me that since my trachea is not straight anymore, due
to the mass pushing it out of a straight line, it will be difficult to
get
that damn tube down anyway. And I may have to have it done when I'm
awake.
So forget being calm anymore; terror reigns. I have a call into the
surgeon
and we kept missing each other today.
I did like your theory on the living will - that hopefully she won't expect
trouble. Though it seems contradictory now based on the above.
Being put
under doesn't even bother me anymore; it is the other stuff. Before
and
after.
Yes, I know the damn sucker has to be removed; this isn't elective
surgery.
If it were benign, I'd leave it alone. Never go under the knife unless
it
has to be. Oh, I think the music in the operating room is selected by the
staff in there; I have no say, I am sure.
Tonight we had our meeting with the pharmacist [from PCP&S]. He
was totally
amazing. He explained facts so clearly and presented us with so much
to do
to prepare. ANd after the surgery. He gave me pre-digested plant
protein to
start taking now. It sets up the digestive tract much better without
it
having to deal with toxins. ANd afterwards, it will be important to
get rid
of the toxins from surgery. Drinking a lot, eating a lot of fiber,
lymphatic deep tissue massage, selenium, a good multi vitamin, anything to
get the toxins out of the system. He suggested psyllium, senekot, and
things like that.
I bought miso and reverse-osmosis water. So we are on a path.
Could not
find the brocco sprouts again today at the market. But we will keep
looking. Thanks for the recipe; I am thinking what I could substitute
for
the eggplant [I never could develop a taste for it]. The sauce sounds
great
though. Thank you.
Spazzing-out barbs
And
you just gave us a load of information there that
was lymphoma, too. We will give this information to my doctors.
It may
help them in finding answers which will determine the treatment. I am
presuming his surgery was a success since he seems ok now, gallivanting
around the globe.
Tell your sister and brother-in-law that the name of the type of cancer they called it is "Poorly Differentiated Carcinoma" with the presence of neuroendocrine cells and endothelial cells. Whatever they know, I'd appreciate it. And if they have a recommendation for radiation down here that we can check out. It would make life much better if we didn't have to go up to Phila. everyday for 6 weeks. I mean, if we have to go, we have to go, but if there is someone good down here [anywhere along or up and down the coast], at any of the hospitals, then we'd look into it.
Worse
yet is that the anesthesiologist told me that since my trachea is not
straight anymore, due to the mass pushing it out of a straight line,
it will be difficult to get that damn tube down anyway. And I may have
to have it done when I'm awake. So forget being calm anymore; terror
reigns. I have a call into the surgeon and we kept missing each other
today. Tomorrow I will get him or jump out of my skin.
You are too too kind; I never thought of myself as remarkable ......just a
pain in the #@*^% to some people. We appreciate your encouraging
words, good wishes and prayers; I KNOW they are working. Last
week proved that, beyond a doubt. It is comforting to know how many people
are there for us. Still, I don't know why I watched my cholesterol all
these years and deprived myself of Chipwiches on the beach. I was
always waiting for the 'big one' thinking I had my father's genes.
Whoa - what a surprise.
Here
is the funniest story. You will laugh out loud. Did I tell
you my sister asked me if I wanted The Rabbi to call me? So he already
called me today. It actually was a surprisingly nice conversation.
No mention of higher powers and the synagogue at all. We just were
like two cancer patients comparing notes on our trials to get well.
Talk about choosing doctors, the way people butt into your life and tell you
what to do even if you don't want their advice, and why something like this
happens and if we lick it what we hope to do afterwards. He was nice
to tell me how good I sound. I took the opportunity to tell him about
our famous Great-Grandfather Sliding Billy Watson, and he had no idea about
him. My sister never told him.
The
funniest part was he lived in an apartment next to ABC studios that produces
our soap operas so he was familiar with the stars I dote on. He said
if I ever hear of another charity luncheon [like those we went to], he'd
like to go. He also was psyched to buy Soaps in Depth when I told him
about our recent appearance in it. A cool guy.
I think we will have other conversations from the way we left it so then I can slip in your great thoughts [they really are - it is a good way to go about it]. I started a little bit today by saying how I am worried most of all about my 2 guys, Adam and Alan.
We
heard from the AFIP [armed forces institute of pathology] lab. My
slides were sent there a few weeks ago. They also called my neck
mass a "Poorly Differentiated Carcinoma," since the cells in the
neck are from somewhere else in the body. So now we have a
confirmed 2nd opinion. But when they take it out, they may get
more information.
You are so right about 'one day at a time.' That is all one can handle in some situations. For some reason, I can do the kickboxing classes much easier now. Go figure. No one can. Usually after the classes, I ache for a few hours and I am not even aching at all. I know this will change for a while, though, after the 19th.
Our
trainer gave us our new weight training programs. She took
into account a lot of things now. Like things for me to do after
surgery without moving my neck. She is really quite the genius.
Her boyfriend is a state trooper and after I get better, we will all go out
for breakfast. So we have a lot of plans to look forward to.
This week I have received lovely cards with notes that you wouldn't believe the words. And the surgeon said I could email him my questions if I can't reach him by phone.
There is nothing like hanging up the phone - then, it is a given, that you think of more questions.
I think I told you that 30 years ago, my mother received treatment for what they called lymphoma. But she died a few months later. We obtained some of her pathology reports and were wondering if you'd want copies of them, if it would be any help for my case. One document in particular was interesting. It was a pathology report of her stomach [long story] but it noted they found "poorly differentiated carcinoma." I could bring these on Tuesday.
Since
we had the PET scan results, Alan is a bit calmer. It gives a lot of
hope to see it is localized. So it seems as if Alan and I are taking
separate 'vacations' this year; me in
Doubletree Hotel on
1-215-893-1600
[voice mail will be on]
I'll give him your number to take with him. We'll go to sleep
very early
on Mon. [about
will be out of email - touch for awhile now. I doubt
cafe for me to wheel down to. So it will be a couple weeks before I
can
hold my neck up to do this stuff anyway beings that the incision will go
from behind my ear to the Adam's apple. I may have no voice either so
that
lets out the phone. Yikes, I'll be cut off. Eeew - literally.
We have been busy trying to find the best radiation oncologist for me
now.
I guess this never ends. We had dinner tonight with a young couple we are
friends with and they know everyone down here so will let us know if there
are any comparable drs.. for the treatment here. They seem to think
there
are as did our primary.
Take
it from me - if there is any way at all, try to reduce any stress in
your life, now. It is very important. We are learning a lot but
have no
regrets at this point. We are thankful how we lived our lives so far.
And
if I get the chance, there are a few things we'll do after this is over.
I did finally get to speak to the surgeon yesterday; he gave us his email
address in case I get other questions and we play too much phone tag.
That
was sweet of him.
He told me all of those things the anesthesiologist told me are 'unlikely'
and the anesthesiologists go overboard and I hope he is right. He also said
he would be there when they put me to sleep [ewww - that sounds like a dog
dying]. The other interesting thing he said was before they start the
operation, they will do an endoscopy of my nasopharnyx and if anything looks
suspicious they will take a biopsy of it and examine it RIGHT AWAY [ a
frozen section]. According to the PET scan, my adenoids lit up but he
said
it may not mean anything since they do light up some usually. Yes, I
still
have my tonsils and adenoids. But if it is cancer, then they may not
do the
surgery since then they found the origin. Then I would need radiation
to
'melt' away the growths and chemo. I don't know what is worse, to tell
you
the truth. Tuesday should be interesting. I won't know what they
did to me
till I wake up.
I read one out of 2 people get cancer. That is depressing. Sorry.
Today was a blur; dozens of calls [to say good luck]. A few friends came down the shore and popped over to wish good luck - one brought a lovely gardenia plant. Then our friends came down and made dinner for us and the Zakutos. Another couple was there [the wife was nice - the husband 'knows everything about everything' and it was hard to take this leaning tower of pompous]. He started to get on my nerves. He is a psychologist and has a patient that is one of the top 5 oncologists in the country [if you can believe him]. What upset Alan and I was he sits and says things like his patient "knows of drugs coming out that will cure different cancers without radiation or chemo but" he would loose his license if he mentioned them or the pharmaceutical company. So he shouldn't have said anything. After all, my life could depend on this. Is this a true friend? Alan and I left early, begging tiredness, but we were both distraught.
Thanks for responding to the last email. We are collecting all the scans and films for Tuesday. What type of advance preparation will we need, to be able to get all the films and a copy of my chart to bring to whoever we pick as my radiologist.
Also, Alan is going to be waiting anxiously outside during the surgery - will someone be able to come out and tell him the results of the endoscopy. We'd really appreciate that.
Thanks so much.
Barbara
Just
a short note - we are going to try to get some sleep.
That is a mixed bag about the chemo today but you are so right. At
least it
is doing its job. That is the best part and an indication you are
going to
be fine, as if you needed that. But it can't hurt repeating it.
I know
that the waiting must be the worst. I can only imagine what must
be going
thru your mind today but we will be praying for you too. It is
hard to be
patient but the doctors only want the best for you . Be
strong and feel
all the good vibes everyone is sending you......and yes! stay away from
kids, malls, and sick people. Wipe off anything that some strangers
hands
may have touched first [like something you buy].
Love,
Barbara
-----
Original Message -----
From:
Alan
Neibauer
Sent:
Subject:
Fw: thanks for being a moral blood transfusion
We
created and sent you an audio/video message!
The audio/video portion of the email is available for playback for the
next 30 days. Either click on the link below or copy it to your Web
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We both appreciated hearing from you. I'd love to talk to you and some folks, but the damn voice is shot [they worked near the larynx - maybe will come back one day]. That should only be the worst of my problems.
Anyway,
it feels good to be home - we are both just enjoying sitting
here [about all I can do] and reading and watching TV [ only comedies
we have taped; there was a great Southpark - the Maury Povich freak show].
It is a time when I can sit and catch up on paperwork in between zz's.
Like it took 10 times as long to balance the checkbook; everytime I pushed
the calculator, I'd fall asleep awhile. Drugs can be good - these
drugs are potent. You know my neck is still numb --- a week later. I
lost 10 pounds in the hospital but Alan is making me great little meals
to get my appetite back. I put lots of good stuff in the freezer
beforehand.
We
aren't to the point at all to ask anyone down for the weekend. Then
I'd be obliged to see them at least a few minutes. I feel that maybe I
should well enough to be with them a short period. In the hospital,
our oldest friends [you know Herb Kaufman] came and I fell asleep within
minutes. This could take months to get the embalming fluid out of my
system, right? Right now I'd have a hard time, holding my head up.
I prop it with pillows. Did you see the photo I sent. Digital
cameras are great.
Thank
you for emailing Adam about going to the shore too. Now I just
remembered that he told me about it when he came to the hospital on Sat.
He did seem a bit excited about that prospect ---to come down.
Speaking of progress------ [it depends how you look at it] - BIG
NEWS!!!!!!!!!!!!!!!!
Tons
o' stories for you; like the nurses we had doing our private duty. And lots
of other things. That week in delirium would make a great novel.
Keep
having fun - - - or I'll be upset you left town. Of course, I missed
you both; Rich - you would have been a hoot to have visit in the hospital.
But never had I had so much attention [which I'd gladly do without].
The residents from Dr. Dan Kelley's service were always at my side - they
are ALL so knowledgeable and kind and personable. Each one was a
pleasure. Then I had the vascular team service. And those
residents were always at my side. When the hemorrhage started. It
was amazing so I put a sign on the door of my room "BY
APPOINTMENT ONLY" after a while.
There
must be something to it. Alan thinks my neck is less swollen tonight.
One of my private duty nurses also made some good points towards this type
of healing. I'll take whatever I can get. You have been so great
throughout all this.
I
will take any and all forms of healing. My cousin in CA. offered
happy hour drinks. It is all working. One of our friends teaches
a lecture hall psychology class in
We
have been surrounded by pillars of support during this nightmarish 2
months and especially the last week and a half. Each person did
something different and it kept us going. Whether it was calls,
cards, emails, or other gestures, each was so important. Of course all
the planning in the world can never be enough; things still find a way
of going wrong. During the 9 hour surgery, I developed a blood clot,
my arm blew up, and "someone" ordered an anti-coagulant for me and
the result was my incision area in the neck, bled for days, doubling over
into grotesesque shapes and colors. That is your photo for the day.
http://www.neibauer.net/Neck.jpg
Because
of that I was on a liquid diet, in case they had to reopen the incision, if
the bleeding got worse. SO it had been a week before I really ate. I
lost 10-12 pounds. All my weight is now in my neck. It is so
heavy with blood clots that I can not hold it up too long. It is a
shame, since we had DaVinci for a surgeon and some member of the vascular
team came in and grafittied his lovely work.
Then,
my blood pressure was off the charts and they tried various medications
[even though I told them which one worked years ago when we worked out the
same route with a cardiologist; and of course that is the one that worked
days later]. I am still seeing stars and suffering from dizziness from
all the other ones still being in my system. And for the pressure now
dropping so low.
For
the most part,
There
are a lot of stories but we just got 'sprung' & I am not
allowed to do much since the clots could be troublesome, if they get
disturbed. And we went back Thursday for a check up and to have
some stitches removed, and next week and then the week after, we keep
returning. They sent me home with notebooks of things to look for in
the neck area and if we notice any, we should return immediately.
This was preferable to staying in the hospital anymore days.
Even though I can't talk [my vocal chords will eventually come back, they
think] and I have 9 hours of anesthesia still in me [I think they embalmed
me], it is great to be home, even to just lounge with Alan and sit and
catch up on a week of our favorite shows.
