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?
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.
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.
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.
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.
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.
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.
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.
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.
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?
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.
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
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.
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
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...
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."
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.
since I am such a valued consumer at the Somer's
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?
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
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.
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.
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
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.
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].
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 [
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.
is amazing he had time to help out with me; Bonnie's mother fell last night in
do like moving from the non-invasive to the invasive and luckily my drs. all
with that philosophy.
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.
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!
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.
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.
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
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.
last emails crossed. We were able to get my appointment with
surgeon moved up to this week, on Friday, so we will be at
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.
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.
The other surprise, amid all that is going on now, was when we found out that
Rich's other office is