January 23, 2002 to February 12, 2002

 

1-23-02

Yes,  I hope the Neurontin  kicks in soon too; so far, the  spasms have
gotten a little worse.  Oh my.  And I have even worse news.  I have a new
problem, health-wise, to deal with, and I am getting a bit depressed over it
all.  Besides the cholesterol problem and the return of the trigeminal
neuralgia [and lest we forget my 17 year stint with heat episodes - that is
what really gets me], I went to Dr. A. today, my primary.  My neck has been
weird.  For a few months, it ranges from aches [which I thought were
muscular from sit-ups] to inside my throat, there is a sensation.  It is as
if I swallowed a pill, and the impression is still there.

Sometimes, a dr. doesn't have to say a word; you can tell by his actions.
He kept feeling and pressing my neck for what seemed like forever.  He
INSISTED I have an ultrasound of the neck and thyroid THIS week with a
barium swallow test.  And he wants me to have an endoscope as soon as
possible.  I could sense his urgency because his nurse ACTUALLY CALLED  the
imaging place to make the appointment.  Both Alan and I knew then, that
something has to be up.  We always have to go home and wait on hold for days
to get appointments ourselves.  What was with this first class service?

The endoscope is my most feared test.  You are put to sleep which scares me
since I don't do well with anesthesia.  And then they push a tube down your
esophagus. I will probably go to Phila. for it because my friend Bonnie's husband is a G.I. guy and I know people that had him do it and they said it was a piece of cake.  He is very gentle. Can you believe that one?

 1-24-02

 Hi Rich:

 Thanks so much for you sweet [and reassuring] answer.  You are great!  At first I thought my neck was aching due to the sit-ups I was doing.   Or maybe an allergy, but it has lasted too long.   This whole thing has me a bit freaked out.   First, my mother, in her 30's had a growth that wrapped around her wind pipe [I was too young to know details].  And second,   the endoscope is my most feared test.  Being put to sleep  scares me since I don't do well with anesthesia. The last time I had a bad reaction that lasted months and months.  And when I was a medical technologist in training we had a much rougher version of the test to perform and it was awful to watch.  Oh, well, that was the dark ages, I suppose.  Maybe this won't be as bad.

 It seems like everything happens at once so  I am disgusted.  I don't know what happened but I started getting those pains / shocks in my face again so now  I am back on my Trigeminal Neuralgia medication.  That means I will be eating very carefully since that is what brings on the nerve spasms. All through last week,  they were increasing each day - - - so I hope I can increase the neurotin quickly and ward them off.  The neurologist prefers me to titrate up with it .  Then I have to stay on it 6 months after the last spasm. It is always something.   I thought about the weather affecting the trigeminal neuralgia...because on our carriage ride, it turned cold and windy as the sun disappeared.  And the right side, where I get the TGN, was in the cold. 

I'll call your office tomorrow since I didn't hear from Mary Lou today.  

Barbara

Sent: Wednesday, January 23, 2002 11:03 PM

Subject: Re: We were just at the primary...

I will forward this to Mary Lou.  Let's get Barbara in next week for at least an appointment.  We can then set up an upper endoscopy for the next available slot.  I will make one if none exists.  Do not worry, and tell Barbara the same.  Bring the X-Rays if you can and the reports.  This is not an imperative however as I can request then after-the-fact.  I will have my office call on Thursday.  I teach Thursday so it may be a crazy day for me.  If you do not hear anything Thursday, call the office Friday - (215) 947-7000.

Richard

PS:  Thanks for the pretzels...

Hi Rich:

Barbara just got back from the doctor because of a feeling in her throat. He strongly recommends that she have an endoscopy and we could think of nobody better than you!  He wants her to have an ultrasound and barium swallow test on Saturday, and then bring the results to a GI doctor. He looked at her neck and thought he felt something, but wasn't quite sure.  Should we wait until the tests on Saturday so we have some results and pictures, or start to set something up now?

When would be a good time to call you about this?

Alan

1-28-02

It also depends how I feel since I am in my 'Job from the bible" mode
these days.

I had some of the tests for my neck; a barium swallow where you drink this
totally vile and thick and gritty mixture [they have actually regressed - in
the '70's they had flavors for the drink - ]  while the radiologist watches
it on his computer screen and saves specific shots.  At one point they gave
me a tiny cup with a fizzy solution and that tasted even worse.  It was only
about half an inch but torture getting it down.

From that room I went to the Ultrasound area where she took her films of the
thyroid and neck.  The radiologist was really a nice guy; they usually don't
tell you anything but I kind of begged him [I can lay it on thick] to put me
out of my misery of waiting till next week. So he said, preliminary
diagnosis, is a hiatal hernia  and a 'goiter.'  And at least, he said, the
hernia doesn't have reflux, yet.  Also, as expected, there is an enlarged
goiter [thyroid.]  I thought goiter was a very old-fashioned word. Now we
have to find out why it is enlarged and what to do about it.  Just so long
as it is not a malignant growth .  I am not ready to handle that.

Anyway, I wanted to get the taste of that solution out of my mouth so Alan
took me to Smitty's [the place on the bay] for breakfast.  I got a wrap but
by the time it came, I wasn't really hungry anymore.  I was having my
trigeminal pains and shocks so eating was hard enough, as it was.  And then,
barium sinks fast and starts to sit heavy so I only ate part of it and
brought the rest home.  One of the town commissioners came in and came over
to talk to us a while so that diverted my attention a little - he's a nice
guy [the one who got us involved].

What a delightful morning.   Sigh...  We will come up to see Rich on
Wednesday.  Though my most severe problem is the trigeminal neuralgia these
days.  The pains are increasing instead of lessening which has been so
depressing .  One today, just brought tears to my eyes, it was if someone
was cutting my cheek and tongue with a knife and then sending shocks into
the raw cut.  I almost fainted. What instigated it was a sip of juice thru a
straw.

 As long as I am not eating,  I feel pretty good usually, and can do
anything.  Meal time is a bitch;  I bought capsaicin cream - fair.  I put a
lidocaine patch on my face - did nothing. Evening the pain killers are not
strong enough to stop the piercing shocks when I try to eat.  More food
winds up on Alan's plate than in my mouth.

1-30-02

Thank you both for your concern.   Jerry was very sweet on the phone tonight; sorry I missed you.  It was an upsetting day.  Today the primary called during breakfast [on his day off so that was a tip-off of what was to come].  He said I need to find a thyroid surgeon for a biopsy because the mass is extrinsic [on the outside] to the esophagus and large.  He said it was solid [as opposed to cystic] so that is suspicious.  And it is twice the size of the thyroid at this point.  So I dumped my breakfast down the drain and hope Richard has some names tomorrow.

 Have you heard of any good thyroid surgeons.  Right now the endoscopy et al will be on hold.  Probably won't be necessary until we get this all settled. 

I better get to one soon. This is so un-nerving. We are very upset.   I wonder if this is the problem that caused my heat episodes for 17 years.  And if so, I wonder also why no one ever did these tests on my thyroid.  Don't forget that my mother had a growth wrapping around her 'windpipe' [that is what they told me - I was little; it could have been her esophagus or it could have been her growth went one way and mine the other]. But then a decade or so later, she was diagnosed with lymphoma.

But my major problem is the damn trigeminal neuralgia - the other has no symptoms really. But with every day, the pains are increasing instead of lessening which has been so depressing . The pain killers I have aren't working this time. One pain today, just came on suddenly and so severely that it brought tears to my eyes.  That is all it took - a simple motion set off the nerve.  And I can't eat chocolate without pain.  Frozen yogurt rules. 

Your caring and encouragement really means so much.  All your hugs [OOOOOOOO] helped a lot.  It is so odd; I am calmer than I usually am ---I think it is the high dose of neurotin I am taking for the trigeminal neuralgia.  They give this to kids for convulsions so I hope it kicks in soon.  That is where my concern is these days.  As long as I am not eating, I feel pretty good.  Meal time is a bitch; the pain has not subsided, but it seems actually worse.   He even gave me a gargle to use before meals [used for patients with sores in their mouth from chemo]  but that doesn't last more than a few minutes.  Evening the pain killers are not strong enough to stop the piercing shocks when I try to eat so I stopped.

As it turns out, we just returned from seeing Richard and he said the first move should be a nuclear thyroid scan.  It is a two day affair.  So I am coming up Monday morning to be injected with the radioactive substance and then get a base level scan.  Tuesday we come back again in the morning to have it read.  He explained that if it is 'hot' it is good and if it is 'cold' it could be malignant.  Then they would do a biopsy.  He recommended a surgeon at Jeanes, if it gets to that point - a Robert Gottsfreud [sp.?].  Any feedback on him would be appreciated.

 

1-31-02

What you say about the secretary who had the thyroid cancer for 30 years, I have been hearing over and over [unless it is the same secretary - HAHAHA].  Gotta keep that sense of humor. And thank you for the names.  I will keep them in mind if I need them.

Yesterday, Rich Moses was very calm and not an alarmist.

It is so hard not to let your mind run away with itself.  You need someone to pull on the reins.  After the tests Monday, we'll know a lot more, I hope.  It was lucky that at first our primary thought it was digestive, which we now know was in error.  That way he insisted we see a Phila. G.I. guy.  Funny how things turn out. 

 

2-1-02

Dear Ambassador Hoseman:

You are the greatest.  Do you have an office in Jeanes so we can drop off some more bricks when we are there?  I hope Bonnie washed the brick first before she put it anywhere in the kitchen, since they were outside - when they were in Margate on the walkway;  people  could have walked on them.

Why isn't your book getting finished?  The world needs it and you have to  share what you know with the multitudes.  It is your duty since it is a unique concept - no one else can do it but you.

'bout-to-be-glowin'-in-the-dark,  Barbara

From: Richard E. Moses

Sent: Thursday, January 31, 2002 10:15 PM

Subject: Re: Thanks so much

My pleasure.  We love you guys.  Bonnie loved the brick.  It is being prominently displayed in our kitchen.  Bring another brick & we'll make sure it gets to the proper couple...  Let's get this neck thing worked out!   Do not get hassled.  I will work you through the medical system...I am your "ambassador."  (This is the theme of my book that will not get finished)!!!

love,

R, your Hoseman  

2-1-02

For me, it was not a good week; I FEEL LIKE JOB, from the bible.    Meal time is a bitch; the pain has not subsided, but it seems actually worse.  Evening the pain killers are not strong enough to stop the piercing shocks when I try to eat..  It feels like heaven to stop eating. 


 2-2-02

We went to the aerobox class today, trying to be on a normal schedule - she
was so wound up, that she kept us for an hour and a half.  She was late getting there and to fill the time, we had done a half hour of weights first, before class, while waiting for her.   By the end of the morning we did 2 hours of exercise; but it did feel good.

It is ironic how things work out sometimes.  We have 2 fun things to be excited about and look forward too.  Alan just got a call tonight from the agent in charge of the charity luncheons and she wants him to take pictures in a few weeks at a women's expo in Tom's River N.J. where Cameron Matheson [from All My Children], will be signing  autographs.  This ought to be so great. And then in April she is planning a huge luncheon in Freehold and she wants Alan to take photos again and get them in the magazines.  That one has about 8-10 stars from All My Children [including Cameron again and Eddie Peck from our carriage ride], One Life to Live, and General Hospital. [which we don't watch].  This is just too exciting – I better not be laid up. You know what I mean?

 

2-3-02

I hope Sliding Billy's gene, that gave me the  sense of humor,  will save
me.  I am really hoping this is a big goiter and they will give me medicine
to shrink it

Harold was at the shore today and called.  We told him we were sitting on
the patio reading the paper and he was welcome to come over.  He asked to
see the neck films and he explained a great deal to us.  He was wonderful to
do this and he tried to tell us things that would be calming.  He is terrific.

 

2-4-02

Today we had a good ride up - no traffic - and there was NO injection. Yippee. They had me TAKE a capsule...but the capsule was in a huge lead - like cup surrounded by layers of protection.  After I picked it up and put it in my mouth, I had to wash my hands.  We had 2 hours to kill at the hospital so we spent it with my friend Lucille who is director of all the labs and now the rehabilitation area.

After the 2 hours they scanned me - it was quick and no wait.  Then we went to the mall. About 11:00.  Eileen Zakuto was there, above us on the 2nd level, so we yelled up to her and we walked and talked about a half hour.  Then we met  Adam on the 1st level at Starbucks, then shopped and went home.  So that all made a stressful time some fun.    Tomorrow we should be out by 9:30 I hope.

 

2-6-02

 

  I am getting restless to know  what 'it' is already.  Though, it was good to have a near normal day today and not have to do that two hour drive each way.  A lot of time was spent on the phone though.  I had to get a request slip from the dr. for the CAT scan and then I had to arrange it.  It is scheduled for tomorrow morning at Somer's Point Atlantic Medical Imaging. 

 

Since we have spent so much time in the car in the last week, we asked Rich if it would make much of a difference if we had the scan down here.  He said as long as they read it correctly...

 

We loved Jeanes; everyone was so friendly and helpful.  Whatever they are doing with their staff to get them to  be like that is very refreshing.  You don't get that in most places.  I would have been happy to come back but our backs [with their old herniated disks acting up] are too painful to sit for so long.

 

Yes, I did tell my sister.   She said, "Do what I do - don't go to doctors." 

 

Dear Rich:

 

We can't tell you how much we appreciate all of your help in this 'thing.'  And thanks for sticking with me till we get some answers,  I am getting restless, waiting, and wondering.  What a challenge I am to all my doctors - - -  never have the run-of-the-mill disorders. 

 

 Anyway, since I am such a valued consumer at the Somer's Point   Atlantic Medical Imaging Center , they put me right in for the CAT scan for tomorrow at 10:30 A.M.   They told me to drink 16 oz. of water about an hour before. 

 

Your office was great [I spoke to Mary Anne - she seems to be a doll] and they faxed me over the request slip.  So I am all set.

 

Say hi to Bonnie.  I haven't yet heard how the cocktail party turned out.  Did you have fun while you were hosting it?

 

Barbara

 

2-7-02

Again, thanks for calling and keeping us up to date.  It is great that Atlantic Medical Imaging came through and called.  I left the tech a paper to give the radiologist.  It had all your numbers on it and a note to call you with the 'wet' reading.  They injected me and it went well.   It is a new facility with all brand new instrumentation. Do you remember seeing it go up when you were here during the summer - it is just over the Longport Bridge , across from the Somers's Inn

 

Look at all my kukameisters this way - you may get to write this up and get it in the "ANALS" of medical history.

 

It is funny that you got the same critique on the head-neck guy at Fox Chase, as we did.  Our friend's friend went there and the guy [a Dr. Ridge] was horrible to her; she had a hearing problem and he talked very low, even after she told him.  So her friend went to Abington, to a Dr. Kukora. She said he was good.  Our friend Herb Kaufman, saw a head and neck guy at Abington called Barry Glaser for thyroid surgery.    Cripes - I have 2 whole pages of names at this point, one name for almost every facility.

 

So here is the weirdest thing, though, that always happens to me.  I had brought my films with me to Jeanes, from the previous tests I had down here and I thought I'd take them back with me.  I am building a shrine with all those films.  But the radiologist wasn't done with them, the tech said.  I should have checked that out more thoroughly.  So now I had to call the film room and send a fax saying they are indeed my films and I give them permission to give them back to me!!!!!!  Then they said, if I want them...  pick them up.  It is so loco.  I brought them up and now I have to stand on my head to get them out of there and mailed back to me.  But the girl in the file room listened to reason and said she'd mail them to me, finally.

 

Have a good evening and tell Bonnie I am so sorry to hear about her mother's injury.  I hope she mends well and quickly. 

Barbara

 

2-8-02

 

What can I say, at this point.  I feel like Job.  We are just hanging in there - I have had in the last week, an assortment of barium, radioactive isotopes of iodine and some other radioactive constituent today.

 

We have had so many people look at the films already. Harold is a terrific guy.  Even if it helps only a short while, it was very reassuring.  He said it could be a cyst in a duct or a muscle tumor [they are generally benign - a leiomyoma].

 

We know it is not a thyroid problem now.  Monday I had a test at Jeanes [2 days] where they give me a radioactive isotope of iodine that ONLY the thyroid absorbs.  SO if the mass were  in the thyroid, it would take it up and it didn't.  So the mass tissue is some other type of tumor.  

Lucille is a living doll and has plenty of her own troubles but she looked up the drs. that some people told me about and showed us which ones had loads of experience in thyroid - neck surgery.  I was planning, in case...... My motto is "PLAN AHEAD - IT WASN'T RAINING WHEN NOAH BUILT THE ARK."  So we have compiled a list of head/neck specialists.

 

It is not over yet; so it is not all good news about my neck.  Rich was sure it isn't thyroid cancer but there is a large mass in my neck that has to be identified.  He wants me to get a CAT scan next so after a lot of time was spent on the phone,    I had to get a request slip from the dr. for the CAT scan and then I had to arrange it.  It was scheduled for yesterday morning at Somer's Point Atlantic Medical Imaging.  We just couldn't handle one more ride up and back in such a short time [so we won't be making dinner tomorrow night].

 

Rich  called late last night and I got the results of my CAT scan from yesterday [which was with contrast so I needed an I.V. - one teen in the office fainted when they did it to her, just after me].  Otherwise, the test went okay .  They all agree, it is not my thyroid, but something growing there in that area,  that is pressing on my thyroid and esophagus.  So now that all the non-invasive tests have been done, I need to have a biopsy, Rich said.  Richard has been looking for a head and neck doctor and he gave us a name today.  Dr. Dan Kelly [ Temple ].  I was able to make an appointment for 2-18 but the scheduler said to call her Tuesday and she 'd see if she could get me in sooner. Rich wants to get this all settled already.

Thank goodness for Richard; he has been more than a friend through this.  You really need 'someone in the business' looking over your care. Some other radioactive constituent I had yesterday, which I had a reaction to, of course, later in the day.

All in all, that Atlantic Medical Imaging came through and called Richard even before the report was typed.  It is a new facility with all brand new instrumentation.

 

It is amazing he had time to help out with me; Bonnie's mother fell last night in her apartment

 

2-9-02

 

I do like moving from the non-invasive to the invasive and luckily my drs. all agree
with that philosophy.

 

Richard  ordered a special CAT scan next to see what it is,  if it isn't the
thyroid, so since we have spent enough time in the car the last week, that
we could be in Florida by now, we scheduled it for the Somer's Point
Atlantic Medical Imaging.   Rich did say that head and neck cancers do not
present THIS way; he said this is ''typical Barbara" stuff.  Always  one
complication too much, where I am involved.   It is so hard not to let your
mind run away with itself.  You need someone to pull on the reins.  Thank
goodness Richard Moses is that type of doctor - he's not an alarmist.

 

2-12-02

 

I am counting on your vibes, especially after today. I really started to lose it, big-time .  Today I gathered the films and reports to take with me to the surgeon.  I was doing okay with all this until I read one of the reports.  As suggested diagnoses,  it had some benign conditions but also the "L" word.  That reminded me ------ get this coinkydink, it is EXACTLY 30 years ago my mother was diagnosed with lymphoma.  February, 1972.  For real!

 

So instead of hitting my head against the wall and asking why this is happening to me I am asking, why have I been watching my cholesterol so carefully for almost 2 decades.  What a waste!  I may not have gotten my father's genes, but my mother's.  What a screwy turnaround.

 

As if this isn't enough to handle,   we also read the size of the mass in centimeters and , 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 is it Satan? Watch out. 

 

Anyway, now I am really wondering why I have watched my cholesterol , just in case this is not benign.  So today we treated me to a Starbucks frappa - mocha - latté - fat drink   AND A KRISPY CRÈME DONUT.  May as well feed this tumor well.  Uh oh - does this sound like I am feeling suicidal.

 

 Afterwards Alan and I were talking about that and we realized that the radiologist wrote all those different possible diagnoses down and he doesn't even know me.  For example, could I do a full kickboxing class if I had lymphoma.  My mother was down and out even before she was diagnosed.  It manifested as a flu or mono.

 

Our last emails crossed.    We were able to get my appointment with the
surgeon moved up to this week, on Friday, so we will be at Temple Hospital
then.  Thank goodness.  I don't think I'll be able to get out of this pickle
without any surgery.  The dr. is strictly head and neck  area and is Dr.
Daniel Kelly.

 

 Call it intuition.  But when it comes to surgery, I have never had any luck - I always wind up worse than I started. And the anesthesia leaves me a mess for months and months.  SO I am really hyper about visiting  the surgeon Friday and anticipating surgery.  Richard emailed me,  "Try to remain calm.  Let's get this thing biopsied before we write you off."  He is such a character and he always makes me laugh.

 

Oh. The other surprise, amid all that is going on now, was when we found out that Rich's other office is 700 Cottman Avenue .   We were dumbfounded.  That was built by Michael Sannuti - the idiot who built our House From Hell in Huntingdon Valley .  I remember going to take photos of that building as it was going up. It was when our attorney told us to try to find out where else he was working.