February 14, 2002 to March 2, 2002

 

2-14-02

 

Also, until we read the size of the mass in centimeters, I didn't realize it
was so large.  It is almost 5 centimeters which is close to 2 inches.  This
does not sound good.  Yikes - an alien in me. Or Satan. Watch out.

 

2-16-02

 

What a stressful day.  Now we wait to see if this thing, the size of an EGG,
in my neck is malignant or not.   You hope you don't ever hear those words but it
almost seems as if you can't get out of life without some problem like that
in the body.

Dr. Kelly seems very good. He  wanted to take the biopsy next week but we
told him how far it is to the hospital and his nurse got it scheduled today
with in an hour.  Then he said he likes to give the results of the tests IN
PERSON, and he wanted us to make an appointment to come up so again, we told
him we already are expecting the worst and to save us the drive, we'd be
fine with him calling us.  And he understood.

He examined me  and looked at the films, and he showed us where the mass was
located on the CAT scan.  Where the mass was outside the trachea,  you can
see it narrows to a slit from a nice full circle.  So he said it should be
taken out no matter what because of what it was doing -- the cat scan was a
cross section of the neck and the films go from the top to down where the
trachea narrowed as it got closer to the mass.  The mass is really
compressing my windpipe and could strangle me if left untouched.

We  went over to the cytopathology lab and the dr. [there were 2 of them]
did the biopsy (four times - four shots at my neck - four needles), and they
said to keep icing the area since it would swell some.  Believe me, compared
to the trigeminal neuralgia pain, this is nothing.  And compared to what is
to come, it is nothing.  Today was a piece of cake.  They should have some
results maybe on Monday.

He said he thinks the mass is attached to and coming from the thyroid and
may involve some of the parathyroid. Both will probably have to come out.
That will mean a lifetime of medicine to compensate for the actions of these
glands.  He said he could operate at either Temple , Jeanes, (or we think he
also said Abington.).  Which do you think is best?

Dr. Kelly went over all of the possible risks, which are always upsetting.
Permanent loss of voice or tracheostomy...

The worst part of the day was driving thru PHila.  First over 95 to Lehigh
to Temple and back via Broad Street .  It is really a cesspool.  Afterwards,
we were going to get a bite to eat at a restaurant we heard about around
17th and Sansom.  The traffic was so bad.

 

2-18-02

 

Yesterday, I just couldn't even put on the computer.  Some friends were down and invited us to join them for dinner, but we didn't feel like dinner out but they were insistent we go over to their place after they came back so we did go.  It was okay sitting and talking to them [4 couples] and it helped while we were there. The guys are funny and it almost felt normal a little.  Then we all went out for a buffet breakfast at the Sands Casino this morning and that was a help.  The rest of the day, we were on our own, and back to our thoughts on the trouble.

 

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 is occurring.  We are so overwhelmed and wondering how it all came to this.  I fear the future.

 

The worst is a tracheostomy... which I haven't looked up on the internet because it has me so upset that I am copying my living will.  I plan to tell the dr. to not do it and just let me die peacefully, if it came to that.  If he won't cooperate, I will seriously ask Rich to put something in my IV so I don't wake up.   This is serious stuff and I know I couldn't exist that way.  Alan is upset how I am talking.

Anxiously awaiting the biopsy results...and packing up bags to come up for surgery.  That took some doing to start that preparation.

 

Why don't they just amputate my head at this point. Dr. Kelly went over all of the possible risks, which are always upsetting.


  I guess there is no solution to shrink this "alien ova"  with  radiation or medicine, is there?

 

The "usual" waiver that I signed had some clause that he could have someone else do the surgery but I'd really only want him since he assured us how many he has done and was quite proficient in this area.  Is this anything to worry about?  I didn't mind a resident taking the pre-visit info but I wouldn't want her doing the surgery.

 

I sure have a lot of questions for a girl from New Jersey , don't I?

 

Nervously Yours:

 

Barbara

 

2-20-02

 

Did I tell you about our  morning. We had to go over to Shore Memorial for the pre-admission testing and they will fax the results to my doctor.  I had to have a chest x-ray, ekg, and some blood letting.  Stay healthy because  I know you'd freak.  This is too much to bear at times.  And then tomorrow they pierce my neck again.

 

very sad barbs

 

2-21-02

 

I really don't even think it is me it is happening to.  Thanks for your email.  And your offer if we need anything.  Right now, we just love the calls and emails.  Everyone is so sweet and positive.  We never realized we had so many good good friends. 

 

This is so not fun. It takes too much time up that could be used for nicer things.

The drs. told me they can't do anything yet for treatment until they  know what they are dealing with on the cellular level.  That means what type of cancer it is and where it started.   So both the surgeon and Rich said that we have to wait to see what type of oncologist I will need.

The surgeon  explained that the dr. that took the biopsy took it from a lymph node behind a big muscle.  The surgeon wanted the mass sampled and that was in the middle of my neck.  I don't understand how the misunderstanding happened.  It is these types of things that make you realize all drs. do is PRACTICE.  And C.Y.A. a lot.  But, we went up yesterday to get the correct area biopsied and if the sample is not helpful, then a regular cutting, slashing, stitching-type biopsy will be needed. I had 3 pathologists today, including the head of the department, and at least 6 to 8 more needle biopsy samples.  The Chief found more lumps, all in my neck,  so Alan and I were devastated. It makes me wonder what else is going on in other places of my body.  Probably scans will be ordered at some point.

 

Today we stayed home, because my throat is super sore this time .  And I woke up with no voice today. But I'll catch up to you.

 

We waited most of the time for the dr. to call with some results but he didn't.  So we finally went out for a break and took a bike ride.  I don't feel like I have cancer.


Once I get my surgery and treatment schedule settled, [that sounds awful] I will feel more in control.   It feels as if I am talking about someone else and not me right now.  It hasn't sunk in yet.  I am seeing the reality of it though.  I was cleaning the bathroom floor and thinking how there will be half the hairs on it soon since I bet I will lose mine at some point.

Love,
Barbara

 

2-22-02

 

Thanks for the encouraging words.      I was glad to read about Phyllis' success. I remember when you were visiting her.  I will call her this weekend.  I have heard dozens of stories like this and know a few survivors myself.  It is encouraging, IF THAT IS WHAT I HAVE.  . So many people are telling me those statistics - I do appreciate everyone beaming good thoughts. Health is everything and without it you can't do a thing. Nothing else really matters. It is sad how life can change suddenly. And that we are hoping it is Hodgkin's.  Who would ever think we'd hope for that.  

 

I will call you soon.  The phone has not stopped ringing here and so many emails have come in each hour.  It is overwhelming.  And I have a sore throat now.  I am not sure if it is related or from  overuse.


 I really thank you for your email.  And your offer to bitch.   The only thing I'm bitching about is not eating all the good foods and listening to the drs. tell me to watch my damn cholesterol.

 

  It feels as if I am talking about someone else and not me right now.  It hasn't sunk in yet.  I am seeing the reality of it though. 

 

My whole life I have been exposed to noxious substances , I realize.  As a child the camel smoke plus dry cleaning fluid.  As a med tech, I breathed benzene compounds, took blood without gloves [the '60's], and had to mop up a formaldehyde spill at Frankford H.S. because the principal wouldn't call the fire department. Then at PCP & S, we had to use a radioactive area.

 

Love,
Barbara

 

Alan Zakuto is a great friend, too - he called with a number of an oncologist at Hahnemann that is his friend.  He is originally from Sloan-Kettering. One of the best cancer hospitals [in NY].  He wants me just to go see him, to talk.  Since answers seem to be slow in coming, and we are getting agitated.  So we will go Monday.  The dilemma is it would be good to take the films [and some slides] for him to look at.  I don't want to ruffle any feathers, if you know what I mean. But we don't know how to call the surgeon's office to get some of these when they aren't done and haven't come up with a diagnosis.

 

Who knows what causes this merde.  Genes

 

Dr. Kelley called late Tuesday afternoon and we have been numb since.   He said the pathologist sampled the wrong spot but did find cancer cells in it.  A small lymph node.  They are pretty sure it is not lymphoma but could be Hodgkin's.  He wanted me to come up to get the correct area biopsied  so we will be there.  And if the sample is not helpful, then a regular biopsy will be needed.

 The surgery is off this week, until he finds out where the cancer originated from.  He said he has to know this first.  I don't understand this at all. I have ideas, but they are not good.  Now we are collecting names of  oncologists.  So if you have any to throw in the pot, feel free.  What I want to do is find the best one that will also let me have the treatment here, but dictate the regime and monitor it, if that is at all possible.  I really want to be close to home a lot.

 I am more worried about Alan than me.  He is being brave.  But I am so sad thinking about what he has to go through.  I never thought it would be this way.

 

2-24-02

 

Just don't believe this is happening to me yet; the news I want is that they read the wrong slides and it isn't happening to me.

 

The surgeon is waiting for the results of a blood test, calcitonin [a tumor marker].  I guess they are trying to narrow it down. That is what I gathered on Friday.  I had the test done down here at Shore Memorial Hospital and they sent it out to Quest Labs, who said it takes 5 days.  Had I known I was going up Wed. for more biopsies, I would have had it done at Temple , already.

 

Then the surgeon's secretary told me she can't get the reports for the chest x-ray, etc. because Shore Memorial told her Dr. Kelley wasn't the ordering physician.  Luckily I copy all scripts doctors write me;  his name is on the letterhead so what kind of b.s. is this about.

 

It is bad enough needing health care, but this other stuff that goes with it is ridiculous.

 

2-26-02

 

So after today's visit, they are on to something else.  So scratch the original diagnosis of lymphoma and Hodgkin's but it is still cancer.  But a rare form of neuroendocrine cell origin.  It looks like I will need very extensive surgery in the neck area to remove all the growths.  First I will need a triple endoscopy which is very frightening.  They go up to your sinuses, down your throat, and one other area.  They are looking for cancer cells up there since they think this is where it originated.  The oncologic surgeon even found that my left clavicle bone was on the soft side, which scares the hell out of me.

He was very thorough and took a good history; at one point he asked me  if I had any 'normal' symptoms.  He thinks some of the  affects I have been feeling are related.   All so typical of me.  And he said it is 'a weird cancer.'  He did think that being the daughter of a smoker with dry-cleaned clothes by the hundreds in our downstairs may be a factor [he said there are studies of people who live over dry cleaning stores].

He said he has done some of this surgery but it is too delicate for him; it involves nerves and blood vessels.  I may loose a jugular and half my larynx and thyroid and thymus and vagus nerve.  So for such extensive work I have to see Dr. Hayden, head of the department [he did Pres. Ford when he was in town and had his thing].  Now we have to decide if we do it at
Temple or Hahnemann.  I see Dr. Hayden on THurs. [ they want it done quickly - like by next week].  We could sense the urgency. We'll be at Hahnemann at 11:00 .

SO if at any point, I don't answer you, I could be in PHila. or in the hospital.  I will try to let you know in advance. I am quite distraught and frazzled at all I have to prepare [this could be more time I have to be in the hospital than I originally planned].

 

Yes I got your first email; we are swamped here with calls and email and trying to find out information.  So if you don't hear back from me you know, it is out of control.    We try to call ourselves or have someone pass a message.   We appreciate your concern, and prayers. And your sweet sweet offer to house Alan.  I am making a list for him; so many people have offered.  He may just stay near the hospital or if they let him, get a cot in my room.  If I can't talk afterwards it will be important since he understands my 'signals' after all these years. But if it isn't necessary and he chooses your 'facilities' - then I am thanking you in advance. 

 

And NO! WE HAVE NOT HEARD ONE PEEP FROM ______; now I know how you felt when you had your illness and certain people were silent. But just like with other news in the past, he hasn't called or emailed.  It doesn't matter; we are totally overwhelmed by the kindness and prayers from our real friends.  We never expected such an outpouring.

 

Rare ---the dr. kept looking at us when he said those words and we rolled our eyes [like what else would I get]. A Barbie cancer.

 

 He'd never understand a lifetime of 'weird.' Right??????  It looks like I will need very extensive surgery in the neck area to remove all the growths.   You must know what I am thinking.

He spent 4 hours with us. I may loose a jugular [since it is already shut down from the pressure of the tumor], and half my larynx and thyroid and thymus and vagus nerve.  And more but I am blanking. We did like him immensely. 

 

2-27-02

 

Thanks a lot.  I need all the help I can get this time; it is the fight for my life, literally.  Meanwhile our friend Harold [s.'s cousin] had some tips tonight for us that made me feel better, for the time being.  He said to hold off the triple endoscope and get a cat scan of the sinuses and better yet, some whole body scans and bone scans.  He was surprised they haven't done it yet.  Though, he wasn't surprised, since being a radiologist he is more in tune with those diagnostic methods [he said surgeons 'think in the box']. 

 

He said tumors of neuroendocrine origin may not respond to radiation therapy.  But we will all check it out.  He also suggested we try to get Temple to send my slides to the AFIP [air force institute of pathology] which is 'the gold standard of diagnosing.  He said they won't look at routine, but mine doesn't fall into that so maybe they would render a 2nd opinion. 

 

He also will try to find us a name of the best CANCER head-neck surgeon.  Now we are out of head-neck surgeons, you can see. Oh, well, what else would I get. A Barbie cancer, no less.

 

2-28-02

 

There are a lot of people that would have wanted to slash my throat but
Temple 's Dr. Kelley gets to do the honor.

 

They are looking for cancer cells up there since they think this is where it
originated.  They only find the origin in 50% of the cases, though.  IT is too small.

The final biopsy  is so me.  It is "poorly differentiated carcinoma."    A
rare and weird diagnosis. That means the cells in my neck tumor don't belong
there but they can't make out totally where they came from.  I will go up
next week for major surgery.   Tomorrow they call with the day.  I will need
very extensive surgery in the neck area to remove all the growths.  It will
be a 6-8 hour affair.  And we hope they do a good 'clean up' job, as they
say.  First he said, he'd do a triple endoscopy while I am asleep, at the
beginning. At least it will be done the same day as the surgery.


It will be 2 days in intensive care then 5 more days in the hospital. Not
pleasant - drain in the neck.  After a couple weeks at home, I need 6 weeks
of radiation therapy [5 days a week]. You know I am spazzing out.

 I chose Temple because the surgeon is equal to the one at Hahnemann.  He
went to Harvard and did his oncologic head-neck surgery at Sloan-Kettering
and is on the board at Fox Chase Cancer.  The Hahnemann guy is tops, too,
but older. That is good on one hand, but I heard younger surgeons have
steadier hands.  Well, we'll see.

 

XXXOOO  - what an understatement.  We appreciated your email so much today;  to know that Dr. Ni did so well and that Ila would say such positive things about Dr. Kelley helps so much.  Especially when you feel like you are falling off an abyss very slowly. 

 

Did Ila say if she knows anything about this type of cancer, how 'virulent' it is, or what the prognosis could be.  I did call the 800 number you gave me and they were great there.  They will be sending me some information; the lady looked up in an oncology text and photocopied some facts about what she thinks is my type.

 

We just got back from having the CAT scans of the sinuses, chest, pelvis and abdomen.  They were a cinch but as you know, it is the agony of waiting to hear what they show.  I can see how this never ends.

 

We didn't pursue removing one of the tumors prior to surgery since Dr. Kelley didn't bring it up again.  Especially because he doesn't know all of what is in and about my neck ---it seems like the one main mass is 2 inches.  At one point, he said he might do that if the FNA wasn't helpful.  But I guess he has enough information now and doesn't see the need to do surgery twice.  I am happy to only have one operation but if you know more why a smaller one should be taken, feel free to tell me.   I am a novice just bumping along here and not liking it very much.

 

We did take a walk this morning and later we went out to some stores and the market and in between  we were frightened to death, for a while.  This is a bitch.  But you know all about it.  I am trying to 'breathe' and 'envision' but a lot of times I can't even concentrate.  Sometimes I feel like I am living my mother's nightmare all over since they don't give a lot of answers, let alone promises, and it isn't down to an exact science.

 

Oh, the surgery is scheduled for March 19th.  His office called and at first I was disappointed to wait so long, but then they told me they had to re-schedule out other patients to April.  These guys get busy I guess.

 

  I am running out of time.

From what I gather, the mass is too large to respond to radiation; they will
get better results if they remove it and any surrounding metastases.  Then
the radiation is reserved for tiny growths they don't see, if they are there
at all.

It is hard to believe I called that 800 number for information on me.

 

 You know I am spazzing out. If I get thru this, life will be changed drastically.  We look at things very differently; not much is important except health.

 

 

  3-1-02

 

We do try to act normal and in between  we were frightened to death, for a while.  This is a bitch.  

 

 Thank you so much for taking time yesterday to answer all our questions.  This is the most difficult situation we ever faced in 35 years of marriage.

 

We went tonight to Atlantic Medical Imaging in Somer's Point and they did the CAT scans.  The technician asked me what the scans were for and I told him how you were looking for the origin of the suspicious cells in the nasopharnynx.  He mentioned that they just got a new PET scan instrument and he suggested that might be a good test for me have because it can detect tumors on the cellular level.  Do you think this could provide information that would help the day of surgery?

 

We are anxious to know what the 4 scans will show.  The technician said they would call you with a preliminary report tomorrow.

 

We have really seen who our friends are throughout this ordeal.  Like Harold has been so calming and wonderful and full of radiology advice.  My friend, Lucille, at Jeanes is having the head hematopathologist there take a look see at my pathology report, also.  So far, this dr. told Lucille that she thinks the pathologist at Temple did a thorough job and did all the tests that they could possibly do.  And she went one step further and told Lucille if she needed this type of surgery, she would use the dr. I am using.   She suggested another place to send my slides to at Fox Chase so I have to contact Temple to make up more slides.

 

 People ask what they can do so if they have any expertise, now is the time to use it.  Rich Moses has been good.  Alan Zakuto too. 

 

3-2-02

 

Well I  got all those pre-op scans last night.  Full body scans and nasopharnynx too.  Lots of barium to drink [to which I added lots of chocolate syrup].  Glowing in the dark contrast intravenous.  This is getting tired quickly.

Today was torture.  It started out nice.  We went to an hour kickboxing class [I feel wonderful - I can't say that enough - it is all so weird], ate breakfast out, and took our car in for a 1000 mile inspection.  After we got into the house again, my primary called and said he was called by the surgeon today.  The surgeon received preliminary oral reports of last night's body scans.  He was told they see a cervix mass.  Numb.  Totally numb.

He outlined what he wanted me to do.  This news put us both over the edge. It is more than I can bear, if it is correct.  I got in touch with my gyn. and she said to stay calm since it could simply be one of my nabothian cysts [that ultrasound detected years ago].  Second of all, all my pap's have been normal for 3 years.  It is fine to have an occasional false negative but it would most likely not happen all these years in a row, she said.  And third, she said she had examined me in Oct. and hasn't felt anything.  Fourth she said  cervix cells usually don't travel UP [but as our friend the GI guy said, with the Barbie, anything could happen; this case may get written up in the ANALS if this awful scenario plays out].  She wants to get the written report FIRST;  so I am trying to stay cool. She insisted she needed to READ it.

I spoke to Harold, the radiologist, and he said the same thing and he is not sure of the caliber of those reading my scans and to get a 2nd opinion.

I am going to my kickboxing teacher's herbalist tomorrow to see if there is anything to boost my immune system.

The surgeon told our friend Rich [GI guy] that  he's never seen anything like my case [of course Rich knows us and our 'luck' in all things so he rolls his eyes].  The surgeon said my case changes daily.  So we had to
start a phone squad with our friends.  Dozens of people [truly good well wishers] have been calling every day.  We tell one or two people now, the daily events and then have them  pass it on to their group.  We can't even
talk about it anymore.  Email is better because it is quieter and we each don't have to hear the horrible news over and over.

You said all the right things - never really understood "one day at a time'  until now. It is sometimes hard to remember I am a  tough  and strong-willed bitch but I will try to get focused.    Peaceful - calm - , removing the
negative fly out the window when you get a call like I did today.  You have to start all over again.  No dream for afterwards - we want to do more of what we are doing now; just want this life back that we have had here the last 2 years.  Maybe an activity for all our supporters, that is what I'd like.  Something like our brunch last year but different.  Not to celebrate,  because I am superstitious and it is NEVER over.  There will always be
follow-up tests after the 'cure.'

Thank you for your offer - we don't need a thing now but will keep you in mind if anything is up your alley.  It is so sweet of you.  Just what you are doing now and your love and support is the best.  We have so many offers
of help and say the same thing; but the thing we need most, people can't do - it is in the hands of the drs.   We know how helpless people feel; we do too.

Just divert our attention, if only temporarily, to tell us about your life - work, what you bought at the market, what you made for dinner, or even more exciting things.  But normal sounds good.  Boring is best, we are learning.  Routine and humdrum is my goal.

Love ya,
Barbara

We were thinking about Alan's family.  His one uncle [Alan's father's brother] has had 2 wives and both have died of cancer.  His other uncle's wife died of cancer.  His cousin had a wife who died of cancer.  Is there something to be said for maybe them having demon sperm that killed their wives?  Can the males of a family carry something toxic to women.