course the last 2 months have turned our world upside down.
if you know any cancer experts here, we desperately need one. We just
got the biopsy report and it was kind of dismal; the cancer is very rare.
The surgeon said it is Thymic tissue carcinoma. 20 people have it now in the
world. . It seems as if, he said, one person per continent per year
gets it. Isn't this swell so there is no protocol for treating it, like they
have for breast or prostate cancer.
you so much for calling today. We are overwhelmed and touched
by your thoughtfulness. It is the best gift that people have given
me throughout this ordeal. We have seen the best side of people during
may seem like a small thing, but your information boosted our
spirits in a way, words can not describe. We appreciate all the
support and caring people are showing at this time. I would never have
expected such a rallying of concern.
even have a friend in
If you can find out anything from Michael Haut or your parents, you know how grateful we would be. It doesn't even matter what their specialty is, ask them "What they would do if their child or mother got ectopic thymic tissue carcinoma." Then that gets the wheels moving and they may think of who we should see. Or they'll ask in their medical practice. We are at a loss. Our dr. is at a loss. He can not answer my questions.
now, I am just too devastated to even feel motivated to go on and trek
around. I am very tired and mentally, I feel like my brain was put out
on Friday. Alan, of course, has the energy to want to find the best.
feel so bad for Alan; I can't even talk on the phone and help him with the
multitude of calls. He is just amazing at how he keeps plugging away
looking for experts. There are no words for him. YES there are:
THE WONDER OF YOU.
asked if I heard from ___. Her last email was nice; others she sent, and
her phone calls, have upset me. When I can talk......
___has sent jokes and I told him a while ago, not to, so I had to write him
that since my recuperation is slow, I can not keep my head up for long and
often I doze off. SO when I do sit down at the computer, I know I only
have a limited time to answer email. I told him TWICE to please do
not send jokes or those non-personal long letters. I delete them without
reading them but that takes up valuable time when I could be answering emails.
I had to tell a few people this ---there really isn't much to laugh about
forward to hearing from you. I enjoy your emails, too. Tell Jerry
congratulations about his meat department promotion. Tell him not to fondle
the pig knuckles. It is good when you two get home from work and enjoy
the river. That was a great move.
Everyone has been amazing in their research but somehow you are at the head of the class. Alan is reading all this information now and will contact him. It seems unbelievable that someone in the middle of the country has seen so many. If this is so, then our drs. will want to talk to him, too. We will keep you informed.
thank you for your offer to do errands on the way down this weekend. We are fine in that regard; you really pitched in and helped where we needed it. For now, I am just too exhausted trying to get over the surgery and then I got devastated to even feel motivated to go on and trek around the internet.
for reminding Alan to take care of himself. He gave us a bit of a
scare. He needed an abdominal CAT scan and x-ray today [and the primary
just called; they are negative ---a word we haven't heard in a while].
It was such a relief. He had a pain in his side [actually for 15 years,
off and on, since our black belt days when he got hurt]. It had
worsened. Next he will have a bone scan to hopefully confirm it is a
hairline crack in the rib. But we are relieved for now.
illness has us just recognizing that we know it is just the beginning so
that is even more depressing. These constant drs. visits are tiring.
We had to see the vascular surgeon yesterday [that is why I wasn't able to
answer] who managed my blood clot and gave me anti-coag. Had to get an
ultrasound - the clot is still there. We also saw the head-neck resident and
she said tomorrow they are bringing my rare case before the tumor board to see
if there is any thing they can come up with.
resident also gave me a script for PT. Some special
techniques may be needed to get my left arm back in working order.
Between the lymph nodes they took out and the clot and the muscle he removed
next to the mass, the left arm is in need of special help. And I can't hurt it
or get it infected. Like breast cancer patients.
may take you up on that walk this weekend. Our oldest friends are coming
down for the weekend and staying at the Moses condo. The Moses offered
it so people would not stay with us and hinder my recuperation. This way
they can walk over, sit 10 minutes [my upper limit] and then go about their
weekend. We hope. If they 'need company' for dinner or anything
and you are free, it would be a nice 'marriage.'
felt bad about people driving 3-4 hours total to see me 10 minutes.
And already I am getting the sense that this couple thinks they are here to
'vacation' so we will have our hands full at NOT seeing them. I have
been upset all week over how to handle too much visitation . They say
they understand and blah blah but want to be here to be a comfort to me.
At this point, 3 days of them is not a comfort but much stress because I can't
concentrate on what I need to - to be comfortable for my incision [I have to
sit certain ways and be half undressed for it not to hurt] and the multitude
of side affects. They want to eat 3 meals a day out; I am not
ready for restaurants out yet. And it goes on.
if you are ready to 'party' with some new folks, I guarantee they are nice.
And very interesting.
Thanks for your reply. We agree...from what we gather, Dr. Cassir at Shore Memorial is well suited for us. Even Dr. Anastasi (our primary) sends his own mother to Dr. Cassir for treatment. We have an appointment for next week.
A friend of ours is an oncologist at UCLA. He discussed the pathology report with others, and they agree that radiation is the best step.
We're doing a rather thorough literature search and will get some articles from inter-library loan. Would you want copies of any related articles that we find?
you every learn of the outcome of patients with similar conditions treated at
Alan and Barbara Neibauer
for going thru the book. What is MGN-3 and how is it administered.
If it is not specific to ectopic thymic tissue gone wild, we're gonna have
to go with what our doctor recommends since we can't do nothing. I am
staying away from chemo, so far. I have an appointment with the radiation
oncologist here next week.
I have seen a holistic pharmacist [who went to PCPS in the '70's]; he's a
big secret down here. A wonderful man. He gave me immune system boosters
for before surgery and for recuperation, but he and other drs. cautioned me
that certain natural herbs and vitamins can feed the cancer cells.
Damned if you do and damned if you don't. Alan has been tireless [putting in
18 hour days - the computer, fax, phone] at searching the world for an
expert or at least someone that can give a prognosis. The literature is not
positive which upsets us when we read it so we are going to pack it in since
tomorrow is a week.
Your father had some very interesting and positive information. While he has not encountered the type of cancer I have, he says that thymic cancers in general are very susceptible to radiation so there is a good chance that radiation can kill the malignant thymic tissues that may still be present. It was a very positive thing, that followed your own positive words and energy.
surgeon said we could search for 6 months and won't turn up anything
since it is so rare. But we HAVE to try anyway. And people are helping
us. They say, like you said, I have to fight and can't give up.
For example, My sister called before - we had a neighbor in
Ann, from our beach group, called and said her son's future father-in-law is a dr. at Johns Hopkins so we pray he can find us an expert in this awful field. Our friends here, Adam and Emily are making some local contacts for us so we have liaisons here.
And my friend Miriam was watching 60 minutes tonight and saw something about monoclonal antibodies being used for hard to treat brain tumors. She wanted to know if this could work for mine so she is doing the internet search for us tonight [Alan is exhausted] and emailing us the findings. She already sent over 4 sites that we will call tomorrow.
This really shows the best side of people. There are so many things that can help that don't cost money. Hope is a great gift. Support is a great gift. It all helps.
Here is a little twist. I don't know anymore if my mother had the same thing. It seems so rare and from the miniscule amount written on it, I don't see any genetic link. My sister did tell me something interesting.
When I was a fetus, my mother was in
I am in a weird place these days and analyzing a lot of my life. If I look back at my job career, I remember days like you had. I have come to the conclusion that they didn't pay us teachers enough to run us ragged; the stress it creates makes a bad environment in the body and leaves it open for horrible disease to take over. Stress compromises the immune system, I am reading. Maybe, and I know it is hard, take it easier and slow down. Or can you hire an assistant there to do a lot of the small stuff. It is worth the price. The havoc created on the body is not worth the price paid in the long run. I used to do everything they wanted and then some, at the expense of my health. You don't realize what you do to the body until too late.
other night a friend called us that we haven't spoken to in who knows
how long. We were in his wedding and his wife died of leukemia about 8
years ago. it sounds weird and it may be my delirium but I have thought of
her often during all this [and really ---all the time before this, she'd
come to mind]. It was no surprise when he called, I told Alan afterwards.
It was just a feeling that [I can't verbalize] somehow she guided that call
Alan is starting to order whole articles now when we can find them. We just
read an medical journal article that said since 1901 , only 90 cases have
been reported of the benign version of my rarity. Ectopic thymic tissue
carcinoma. One article said that lots of people have ectopic tissues in all
kinds of places. But something triggered mine to grow there in my neck and
thus my tennis-ball sized tumor. Worse yet, it is malignant. Most cases
described in the literature are not malignant. That also makes mine what
they are calling, "extraordinarily rare. " It is a hard concept to grasp,
given all the billions of people on the earth.
There is an organization of Rare Diseases and we called; my cancer is not on
their list. Alan spoke to a dr. at Yale today; he had one case - a 26 year
We have gotten calls and notes from the Mayo Clinic, Johns Hopkins,
and around the world, and even their experts said they have seen thymic
tumors but not ECTOPIC thymic tissue tumors that are malignant. Our surgeon
said when we look it up 6 months from now, we'll be reading about me. I
didn't want this 15 minutes of fame.
The consensus from all the 2nd and 3rd, etc. opinions is about 98% say
radiation. So now we need to be sure there is a consensus on dosage and
type and where and how long. It is falling in place. We need now to make a
list of all the RIGHT questions to ask the radiation oncologist. Any ideas -
you are good at that.
We are being inundated with information and appreciate it so much.
I am sure your hair to you, is like my neck scar to me. It is something that is at the bottom of the heap. People look at my neck and the slash and say [well meaning], oh, it looks like it will heal and not show. I could care less if it shows or not. As long as I am here with a neck, I don't care if I look like O.J. got at me. I need to just live. So many things are unimportant anymore.
And I don't know about you, but my tolerance for other people and their insignificant little worries is getting to me. Like I keep getting email from someone who is tired from her sinus infection. I finally wrote her that at least there are 100's of cures for that from her pharmacy or dr.
found a pathologist at
I have a good story for you. It is similar to your 'first oncologist' story where she was second guessing your surgeon's choice. Someone wrote me that I should have a second surgery to remove my thyroid and thymus. It was indicated in the pathology report, they said. I was indignant for you when you told me your story but I know exactly how you felt that day,now. Exactly.
If only I could start talking, then it would not be so much like I am a shut-in, at this point. After 2 sentences, the vocal cords shut down.
passing over Passover here this year; I am lucky I eat what I eat, at this
point. I lost 10-12 pounds already. There was no time to shop and
prepare and now there is no energy to be able. Matzo wouldn't go
down anyway, considering the irritated throat I have.
Dear Dr. Kelley:
You are getting a lot of compliments about my surgery..now that the graffiti artist purple is going away. Our GP, Dr. Anastasi, was very impressed by how well my neck looks, for example, compared to neck dissections he witnessed when training.
of the rarity of my diagnosis, we sent the slides to a second pathologist --
Dr. Saul Suster, Director of Anatomic Pathology,
Since this is so extraordinarily rare, are all the tissues removed from me, going to be saved, in case more tests are suggested?
week was consumed with trying to get information on what THEY are NOW
calling my cancer as "EXTRAORDINARILY RARE." So all our time went to calls
and emails to institutions.
Joan's name was a dead end, literally. It is a shame - she meant well. Her
dr. was so misinformed because he did not know about my type of cancer - it
got my hopes up and then I was so let down. He gave a name at the Mayo
Clinic who was supposed to be an expert in ectopic thymic tissue carcinoma
[it took us a day to find the dr.'s phone number and a day for him to
answer]. He told us he HAS NEVER SEEN IN HIS PROFESSIONAL CAREER a case of my cancer. NOT ONE. And no one has at the Mayo Clinic. Or at Fox Chase
Cancer or at Sloan Kettering or at
Hopkins. And I could go on.
At Sloan Kettering they want to see me ------to experiment on. Their exact
words, "We'll do something ad hoc." That - I do not like the tone of. It
means they will make it up as they go along.
So we need you to keep at your contacts. I feel like this is a catastrophic
situation. Someone must know about it. We have to find that person.
We haven't been able to find or contact anyone with the same tumor yet.
[I am not keeping a 'journal' but we have file folders of tests, notes, and
some other papers.]
asked about my strength. And if I got out. I overdid it. It was a
tough weekend. FIRST! The call from Ann's put the biggest smile on both
our faces. That was the nicest thing people could do. The perfect gift.
It was wonderful watching Alan talk from person to person. Thank everyone
for us. You all are great and true understanding friends. You all know how
to be so compassionate. The Kaufman's came down for the weekend and stayed
at the Moses condo. The Moses are very sweet and offered it so people would
not stay with us [oh, yeah - sure!] and hinder my recuperation. This way
they can walk over, sit 10 minutes [my upper limit] and then go about their
weekend. We had hoped.
am not ready for restaurants out yet. I choke a lot. But we did go to Billy
Ho's with them last night - the Welsh's came too. This morning we went
to Smitty's - the Bassman's came too. It was fine since I can't talk.
But it was too much being out.
Wasn't that some story about the Sweig's. I am glad to have my Seal of
Solomon back. I bought it when Adam was at the
we met him for dinner. We found a store that sold things like that. I only
had it a very short time and lent it to Elaine. I had wanted it back and
didn't know how to go about it. It goes back to biblical times. Alan and
Harvey didn't say much; just a few words. Elaine's note wished me luck.
don't know when radiation starts ---I have to heal at my incision INSIDE
AND OUT first or I could be in big trouble. We see the radiation oncologist
this week [and a 2nd opinion at Hahneman next week]. And a medical
oncologist this week. I can't stand this. I was at the primary on Friday
for lots of problems with my blood pressure and pulse and side affects [too
disgusting to go into]. How life changes quickly.
tokens of hope are a great boon during this time. Every thing helps. You
just wouldn't believe it what happens when we open a card or email. It
is just too scary how a few months ago, we didn't have to think to enjoy each
little thing and now we have to concentrate on just that to get
thru each minute of each day.
5 couples we know went out to dinner in
My nutritional goals USED to be those that would make me avoid the 'big one' ---that heart attack the drs. threatened me with for decades so I ate 'cardboard.' Now that something else got me, I want my food to be delicious so I'll enjoy it. Because I am not sure what my future is. It is like I fell 'off the wagon. One of my favorite foods out is South End Pizza [which we had this week] and the Appleby's Oriental Salad. I bet it has a bit of fat in it but the taste hooked me in. And there were a lot of cabbages in it [which I never ate before but they camouflage it so well].
We are leaving no stone unturned to find out about this remote cancer. Though the research is exhausting us. 18 hour days on the computer and fax and phone and not getting answers is tough.
have been pushing myself a bit and am paying for it somewhat tonight. The
Kaufman's came Friday, they sat here on our patio a while [20 minutes,
till I tired] and then they went to the condo. When I revived, we went
to Two Cents Plain - I really felt guilty just letting them see
me 10 minutes. I KNEW this would happen. Saturday we went to
Surfside casual with them [I sat in the car most of the time], Billy Ho's for
dinner. The sitting isn't as bad as having to talk. I still can't and it
hurts; people say don't talk, I'll talk for you but then they ask me
questions. Nodding my head hurts my neck so that is out. And most questions
are not yes-no.
I'd appreciate it if you don't send me jokes. I can not keep my head up for long and often I doze off. SO when I do sit down at the computer, I know I only have a limited time to read and answer email. Twenty people sent me those non-personal long letters. I delete them without reading them but that takes up valuable time when I could be answering emails.
for helping today with the fiasco. That was some mix-up in the
office there today; we have used drs. in the past that are the greatest but
their office staff leaves a lot to be desired. But they finally called back
and agreed to give me an appointment tomorrow with Julie.
Alan and I both kind of lost it over this when we were on the phone with
Bonnie. We couldn't believe I endured a 9 hour surgery and the bleakest
pathology diagnosis, only to have to put up with her double talk. That one
needs to be taught how to talk with some compassion to cancer patients.
You weren't the only ones that recommended Julie; we have a long list of
people, including several physicians and our Mayor. So we will let you know
what happens tomorrow. We have the highest of hopes.
Sent: Friday, April 12, 2002 8:38 PM
Subject: julie childs
> julie sent me back an email--i told her that you have an appointment already--she is so gracious--you will really like her--mention our name when you visit so she knows that you are our friends--emily
doesn't remember ever having radiation as a child, although her mother was
carrying her in
Thanks for the advice! It is greatly appreciated. I'll fax you a copy of the pathology reports FYI.
Life here is tough; it is bad enough to try to recover from surgery but dealing with cancer is a mental anguish. I feel like I am in puppet show. Like where Punch keeps getting hit with the bat by Judy. And tries to get up and then gets punched down again. I was trying to pull myself up again after the first biopsy report and then after the surgery...... then another punch came along with the biopsy report. And now - after trying to recover from that -
Yesterday we met the oncologist and she totally depressed me. I was just starting to bounce my spirits up AGAIN [after the biopsy news] and she says she wants to combine AT THE SAME TIME, chemo and radiation. I am so against this FOR many reasons. All the drs. we wrote to at the major institutions [that saw my pathology report] say surgery and radiation. It is unsure of if chemo will help this type of cancer. I can't imagine having side affects from both treatments together; it would kill me. It would be cisplatin [a heavy metal with platinum that can destroy your kidneys]. The literature is so up in the air about all this for head-neck cancer
really do NOT want chemo; it is the only thing I will not do. It scares the
hell out of me; what we read is not good when both are done together. SO
it is major decision time; no matter what I choose, there will always be
mental agonizing if it was correct.
understand how I felt inside... because I looked good, she said, over and
over. It's nice to be told ONCE, you look good, but then she
extrapolated that I feel good. I had gotten the sense from her email that they
were here to 'vacation'. We had our hands full at NOT
seeing them. I had been upset all week over how to handle too much
visitation . I really wasn't ready.
won' t repeat these mistakes.
Kelley talked with a radiologist down here (Dr. Cassir, who trained at Sloane)
and they think it is important that she start right away. So these last
few days have been spent mostly in doctors offices. She saw an oncologist who
suggested that she consider chemotherapy in addition to radiation. From what
we've been told (from people like Dr. Kelley), the use of chemo on cases like
Barbara's is not really indicated, so Barbara has opted to do radiation alone.
She doesn't think she's up to both -- with the stronger side effects.
saw Dr. Cassir yesterday (Wednesday) and he wants her to start treatments in
Monday. So she went today for some scans and for them to setup her treatments
-- tattoo markers and get everything ready. She has Friday and the weekend
off, and then starts Monday. It is all going so fast, but she also wants to
get started to make sure any "leftovers" are taken care of.
radiologists said that having chemo at the same time is up to her. He said
that it is a more aggressive treatment but there is no real proof cisplatin
(that the oncologist recommended) would help. Barbara selected the more conservative
route, and the radiologist feels it is okay after reviewing her PET scans and
a remarkable person, and still has her sense of humor. She's trying to keep up
her energy and not think too much about the road ahead.
far as Flo's recommendation at Sloan, we don't have the luxury of time
anymore. The drs. say they need me to start the next step now. If
any cancer cells were left, they don't want them to start proliferating.
It is frightening as hell. The surgery healing time took a while and
they want me to do adjuvant therapy of some kind. At once. It will be 7
weeks of radiations, starting Monday.
it is major decision time; no matter what I choose, there will always be
mental agonizing if it was correct.
Someone wrote Alan tonight from a major cancer center and said that would be trying to overtreat me. The oncologist, though, tried to scare me [like a sales pitch, I felt].
I decided not to have a local oncologist; I don't need it for now. We saw the radiation oncologist this week also and he mentioned the chemo but said it was my choice since there is no real proof cisplatin would help. It is only some drs. are more aggressive than others; some are more conservative.
He explained most of the side affects JUST FROM THE RADIATION and some could happen down the road. Several years. It is not pleasant. Since the area near my sternum will be radiated [the thymus] and that is near my breast...fill in the blank. This is like a horror movie. Yes, I could end up with breast cancer from this.
Also, the thyroid could stop working and I'd have to go on medicine to regulate my metabolism. And the carotid could narrow [remember I already have one that is 50% occluded] and that would need surgery or a stint. It is awful. He said these are rare...but look at the cancer I pulled out of the hat.
Yesterday we spent hours at ACMC Mainland for simulation - where they tattoo your skin with markers, make lead shields for some areas, etc. I can't believe I am writing about such things. It is surreal. They should be ready to start my treatments on Monday. It seems so soon but really it is necessary. The surgery will be 5 weeks then and the PET scan was over 7 weeks at that point. If anything was left then they have to get started.
I now know what one day at a time means. I can not look ahead or I won't get past this period. I have to come up to see my dentist in Jenkintown, by Monday for a check up. Since they work so near the mouth, in my case, there is a lot he will do [fluoride trays, meds, etc.]
It is overwhelming and we can't even think straight. There are no words for it.
I feel like this is a catastrophic situation. Someone must know about it. We really tried to find that person. Thank you for your support. There really is nothing at all we could need or that anyone can do---except find out the answer to our problem. Nothing else really matters. Because without the right answer, there won't be any life.
SO I can't keep investigating the treatments of others. During the simulation at the hospital, with the radiology oncologist, 2 nurses, a nuclear physicist, and one other staff member [something with physics], it was very uncomfortable. The hard part is they make a kind of mask that goes on my face at each radiation session to protect parts like the brain and salivary glands.
was 2 hours of CAT scans where I laid flat on my back and this 'mask' was
secured tightly to my face and the table. I can't swallow good yet [I
need to drink with a straw and lean a certain way], without choking and to be
in that position, was torture. I couldn't swallow that way [flat on my
back with my head tilted way back] as the saliva would build up and I would
cough and choke and that made me move. They were very nice and understood and
let me up every 20 minutes but still...it was tough.
Then they had to give me tattoos [no hearts or flowers ---just dots]. It is similar to the real things ---needles and dark ink. That guides the radiation beam. The nurse came in to give me side affects to expect and what to do for them. And the dr. wrote out several prescriptions to fill, in case. They were drawing all over my neck and chest with markers to get the sites just perfect.
I have been exhausted and the pulse and blood pressure medicine is not adjusted right yet. SO that doesn't help.
wrote Alan from a major cancer center [
I spoke to the physical therapist about my left arm lymphedema
and the interesting point she made is she didn't think she'd want me to come
into their rehab offices since so many people there are sick [like with
colds]. She said the lymph removal plus the regular surgery makes your
immune system weak and especially, if you are going on to radiation, I have
to really watch myself . This doesn't seem like me I am writing
about ---what different emails compared to 6 months ago.
I can't wait to get back to normal again, if it ever happens. These
constant drs. visits are tiring. We had to see the vascular surgeon also on
Tuesday who managed my blood clot and gave me anti-coag. They did an
ultrasound and the clot is still there.
It pays to get a common cancer; it increases your chances magnificently. The stars were just not with me. Lots of people have ectopic tissues in all kinds of places. But something triggered it to grow there and thus my tumor. Worse yet, it is malignant. Most cases described in the literature are not.
problem with all of this is there are NO protocols established on how to treat
this since not many people have it. That means there is NO set
treatment. That is the bitch of not having a common cancer. They
know what to do with it. This really shows the best side of people. There are so many things that can
help that don't cost money. Hope is a great gift.
Anyway, this is funny - I have been given a medical mandate to start being in
my 'sterile' mode. Since they will be killing my good cells, too, [white
blood cells, etc.] my immune system will be suppressed and I HAVE to act
the way I have been for years. Aren't I lucky - some people have to
learn how to be clean. NO crowds, kissing or hugging people, cleaning
off anything my hands will touch, even to the point of wearing a mask out,
for offering but there is nothing to do, except keep sending good vibes to
heal me. You and Rich have done so much more than anyone so there is nothing
to do. We just thank you for being there in so many ways for us. We
stopped at your condo yesterday for 2 reasons. I wanted to be sure
What you said about flowers is so true. I truly loved the bouquets in each room but they were a lot of work. Some, you have to add water to initially [the florist puts in a card]; they all need tending. And then when they start to die, the leaves and petals make a mess that I don't have the energy to clean up. And the odor of stagnant water......
Visitors have been sitting with us on the patio [my favorite place] for about 10-30 minutes. Select people, of course.They understand when I have to go inside. Because after one session of 'talking' that is about it for the day. We found out [in the hospital - I had forgotten] I am anemic too, which doesn't help the fatigue and uncomfortableness.
wait till I am not such a downer anymore. - Someone, meaning well, told
me only answer yes and no to their questions. Sorry it didn't work ---
all weren't yes or no answers, as is typical with me. So that was
a frustrating "conversations." Oh, do I have good stories for
you one day. People that are so nice and sweet and a few with gall.
was yours; Dr. Patrick Loehrer. Mainly because of his credentials and he
said what we wanted to hear. A perfect combination and he and Alan did some
emailing, that made us feel a lot better about our decision. It was
ironic - how all names came back to him.
This is interesting - Alan has been trying to find out information about
that oncologist we saw.
Whereas the opinions for treatment that we are going on, read like this dr.
at Moffitt cancer center [MD from Loyola, Internship at Mayo clinic as well
as Residency at Mayo Clinic. And 2 Ph.D. degrees].
The other dr. got a Ph.D. from McGill in
Harvard. He has received scholarships, grants, and teaching awards and we
saw his publications. What do you think?
Everything is on the internet to make wise choices. It is incredible what
you can find.
We both love the card and had a good laugh at the picture of the chicken; we will keep it on the refrigerator because it makes us happy.
After we got off the phone, I thought about what you said about your eye whites and remembered what the drs. and nurses and the literature they gave me, told me with the radiation. They said to tell them everything even if I think it is not significant because it may be an indication by dosage needs revising. So tell your oncologist about the jaundice; it shows your liver is working hard to get out the bastards. They deserve the death penalty. That is what my friend Miriam wrote me.
How is John doing at HUP? I would love to know what he feels about the care there, in general, if you are a patient. Our friend just had big surgery there and he was so upset. He was out of it [but in great pain] due to the anesthesia and when his wife came in, there were puddles all over the floor and the bed was soaked. She saw the IV was out and her husband wasn't getting pain medication; they called for the nurse. It took an hour to come. And the stories get worse after that.
--- 3 down, 32 to go. I am very very tired; it is unbelievable how I can
just sit and stare for 5 hours after the treatment. I am anemic too.
The beta blocker for the blood pressure is causing enough havoc in my
intestines so I can't imagine making it worse with iron. For now, the
value is just on the borderline, so we'll see.
radiation is much worse than I anticipated and I have only had two treatments.
It was upsetting for the short while I was at the radiology department - the
mask they made was intensely tight on my face. It wasn't that way when
they made it last Thurs.
I had several panic attacks in between what they had to do to me. It was
pushing my nose flat, it was so tight; it was pulling my eyes to the side of
my head and pushing my contact lenses into my eyes and it pushed my lips
closed so I couldn't talk or call for help. I don't know how I am going to
endure this. The worse pain was it pushed my cheek where I have the
trigeminal neuralgia. And then they screw it down into the table and there is absolutely no leeway.
I asked to see the dr. afterwards, and Alan and I told him my problems. The
one we met [there are 5 total] is from Fox Chase Cancer Center so I was
happy to see that he was aware of my rarity and knew the up to date technology for it. He said to have the technician cut out some of the mouth, for release; if they can't make it comfortable, it will have to be made over. Then the rest of the day, I felt not quite right - some heartburn, no appetite [it is not good losing weight this way - it is not controlled], and my skin is starting to get sensitive there. But now it will be the front AND THE BACK. The problem is that the skin is so sore still from the surgery.
Today, while I went to physical therapy [for the left arm and shoulder from the lymph node dissection], Alan [I didn't know he'd do this] went to the hospital to talk to them about the problem. I was up all nite with an upset intestine. When we got to the room for radiation, they took me to a small office to talk to me and a lot of suggestions were made. And the social worker was a huge help.
The funniest coinkydink happened; she handed us her card and when I saw her
last name, I asked if she was related to a Ph.D. I had at
60's. Turns out it is her father and he lives in Linwood now. He was
instrumental with me going into teaching and back for my master's degree;
and we had kept in touch while I was in the school system. What a small
I kept thinking that this was a good omen - all during the treatment – and it went a little faster for me. Not easier, but less of a panic. I have to stay in that position. I am not usually like this. The initial biopsies, tests, and surgery with its blood clot and hemorrhage were easier to take than this treatment. Try laying on the bed, FLAT, hang you head off of it, lower than your chest AND TRY TO SWALLOW. TRY NOT TO SWALLOW FOR 5 MINUTES OR SO.
am glad I am not doing both chemo and radiation together. I know that
would be suicide.
friend Miriam, the artist, said to envision the cancer cells as criminals
---very stupid, inept criminals, and that the radiation will kill them. You
know, like those stupid criminals that Jay Leno reads about. She comes
up with great imagery for me. Like picture them the al queda and the
radiation is a nuclear bomb......
was to have been the first treatment but it was put off till
Tuesday since the lead blocks they made didn't fit right. Rather than
have me wait around, they said to come back tomorrow. We went up to the
dentist in Jenkintown [to get fluoride trays made, teeth cleaned, some
prescriptions, check up and films]. Your teeth are more susceptible to
cavities with the radiation. SO you have to do a lot of precautions.
was upsetting for the short while I was at the radiology department - the mask
they made was intensely tight on my face. It wasn't that way when they
made it last Thurs.
on Tuesday it was as bad and I had several panic attacks in between what they
had to do to me to get me ready for the zapping. It was pushing my nose
flat, it was so tight; it was pushing my contact lenses in my eye, and pushing
my eyes back to the side of head and it pushed my lips closed so I couldn't
talk or call for help. I don't know how I am going to endure this.
The worse pain was it pushed my cheek where I have the trigeminal neuralgia.
. And then they screw the mask down into the table and there is
absolutely no leeway.
now it will be the front AND THE BACK since they will microwave both.
I was in the hospital they found out I was anemic, after the surgery [my
hemoglobin dropped from 14 to 11]. And it is still at 11 so that may
explain my fatigue and light-headedness and lack of energy still.The dr. told
me the radiation will make me tired too. How do you add tired on top of
tired. Call Goldstein's.
But we haven't even gotten to the side affects Yesterday, it left me dead tired for 5 hours. All I can do is only just sit and stare. Absolutely NO energy to move. Couldn't read or even close my eyes. My throat hurts and food is not appealing at all. I have to force myself. So about I ate a doughnut [chocolate cream filled]. Afterwards it just sits there not feeling great.
The other thing I have to be really careful about is the sun. Our friend [on chemo] who walked on the hot sand, but didn't feel it, got an infection that was so severe, they had to remove her toenails. I am really covering up because I don't want any more problems than I am going to have. The drs. don't paint a pretty picture and I can see it is getting tougher each day.
I read every morsel on medicine and health and now I just push it aside and
Alan does the reviewing. I spoke to another woman [also a med tech who
had Hodgkin's] and she said the same thing happened to her. If I
start to read something, I get an assortment of emotions so it is better not
For me, I guess I can only hope for a period of time where they leave me alone for a while, even if it is a few weeks, without seeing drs. or having tests. But that is a ways off, for now. The weekend is actually a pleasure in one regard, even in spite of all the side affects and stress of the diagnosis and treatment options - I had the days off from any drs. or hospital visits or tests and the CURSED MASK. It is so hard to explain how it feels - no undressing, injecting, scanning, no one poking me. I have a really full dance card.
am starting to tell people who we accepted invitations to weddings and
engagement parties to not expect me maybe. My neck is turning red and peel and
become painful and then my back will. They cook me on all sides. I can
not believe I am doing this. When we go in the hospital, as we
walk down the hall to the radiation area, my blood curdles now.
Dear Dr. Kelley:
Two of the lymph nodes taken from Barbara were positive, nine negative. Were the two positive nodes the ones closest to the mass?
Did the electron microscope report come in from the pathology?
you get nothing but good news from here on out. Through the years, I have
always trusted my intuition and it tells me that you will enjoy a total and
permanent recovery from this thing and that the nightmare will end. I have
read so many biographies about people who have had adversity. One theme
that constantly comes up is how good friends or family made a difference,
mainly by just being there. Just everyday conversation, taking a walk, and
doing normal things that help the time to pass are all valued by survivors.
That sure seemed easy enough to write; now if I can take my own advice. I
am taking great comfort in all the people that have contacted me since this
began. Some are old friends that we haven't seen in decades, some are even
older friends of my parents [members of the synagogue], some are parents of
our friends, and of course, new friends [like you] ------ it all makes for a
bright spot in the day and helps make this ordeal a bit more bearable.
Alan and I are also extremely touched by the medical profession. At times,
we both could actually sit down and cry ---they are 'that' nice to us. It
is ironic; if we wanted to talk to a dr. [like a primary] about an issue,
chances are it is almost impossible to get them to call back, from our
experience over the years. But our daily diet has been doctors from
Harvard, Yale, the Mayo Clinic, etc. calling and emailing us for weeks,
trying to help us make sense of my rare cancer. One dr. from
an hour on the phone with us the other night. Another at
because I was a medical technologist and he felt it wouldn't be right to
bill an allied member of the profession. I never knew why - after I decided
to teach - each year I sent away the form to keep up my ASCP [American
Society of Clinical Pathologists] registration. Now I am glad.
It was interesting that you mentioned the interferon. Though I am not too
familiar with that [that wasn't around when I went to college], a friend of
ours has Multiple Sclerosis and has been self-injecting it for years now.
He says he has no side affects. And it has helped his disease from
worsening. But then, I wonder if there are different types of it.
It is good that Sloan Kettering had something to offer you. The gleevec
sounds like what they will have for each type of cancer some day. We got a
call the other evening that I am "too weird for Sloan Kettering." That is
what our friend told us. He is a G.I. doctor in PHila. and his sister is an
anesthesiologist at MSKCC. We always have Passover dinner with them and
they wanted to help.
For weeks they have been searching for THEE dr. at Sloan for me. Since I
have a 'weird' cancer, Rich said, his sister said there is no one that is
an expert in mine---or has even seen a case of mine. Sloan is very
compartmentalized. Each dr. has a very narrow specialty. And they said I
am better off doing the treatment here and continuing as I am. On one hand,
it is a relief not to have to start over and trek to NY. It is 3 hours each way from the shore. But on the other hand, I was holding out hope that maybe at a big cancer center they would have a 'gleevec' for me.
In answer to your question, I do have a therapist, from a while ago. Have
my situation with the Phila.
luck would have it, my therapist moved to
in touch and are doing the therapy via phone and email. She knows me so
well and I just couldn't start all over again with someone new. And she is
Alan is my main pillar of strength, though. And so loving. He should get a
medal. I am recalling the morning of the surgery; the operation was 3 hours
late and I just laid on a gurney by myself.
I felt so bad for him. He sat from till that night till he could
see me again. Of course Nancy and friends were with him, thank goodness.
And the dr. would call him every few hours, with updates. But I just felt
terrible for him - his routine reduced to sitting in a chair in a hospital
room, the feeling of helplessness, and so stressed out. That is what
bothered me most - how Alan sorely needed more rest.
By the way, if there is any way we can help you, let us know. Especially, if
you need computer help or research. If you send us your mailing address, we
can send you a copy of Alan's recent book.
It is as hard for the spouse; how is your wife doing throughout this. It
is as difficult for the spouse as it is for the patient. People tend to
forget about the spouse. I used to do all the talking on the phone and help
him with the multitude of calls, so he could write. But now the burden
falls on him. There are no words for him. YES there are: THE WONDER OF
YOU. Do you know that Elvis Presley song. Well, last summer...... this is a
Alan surprised me ... on July 4th. He sure can keep a secret. We were
invited to a friend's condo pool area for dinner .....she does this every
4th. Then we were going to all walk over to the beach and look towards
But Alan went home after he dropped me and our cake off and said he would be
right back and bring back a surprise. Well, he came back dressed in an
Elvis costume and wig [ordered on the Internet]. He announced himself as
ALvis. And he told all our friend's to sit by the one they loved, he passed
out words to one of Elvis' song ["The Wonder of You"], and said to sing
along. He was so into the roll. He was saying "thank you very much" the
way Elvis did. Our friends' neighbors were coming out of their condos and
getting into it [someone yelled "Elvis is in the house"]. Everyone wanted
their picture taken with him.
And when we walked over to the beach, horns honked at him, people yelled "I
knew Elvis wasn't dead." It was a scream. And Alan is saying, "The King
Lives." It was romantic and fun.
How are your children handling this or are they too young and do they not
know really what is going on? The other person I feel so badly for, is
Adam. He was such a loving, dear, sweet young child and now is that way as
a young man. He is very supportive of us now and has had some mature
conversations with us about it. He told Alan, when I was out of it after
surgery, that he is sorry about all this. He took me for granted, he told
Alan, and always expected me to be there. When I was in the hospital - he
came and read poetry to me [since I can't talk]. He feels more comfortable
in expressing himself that way, writing poems in lieu of email chatter.
When I asked him, as I always do, what he wants for his birthday, he said
''just for my aunt to get well.'' So non-materialistic. But harder to 'buy.'
Thank you for keeping me in the weekly prayers. It is a comfort to know
this and it HAS to work since so many people have told me they are saying
prayers for me at their synagogues and churches. I will pray for you at
"Temple Beth Mer" [that is what we call the 'synagogue by the sea' - French
for the beach- because it is so beautiful, we feel if God is anywhere, he
has to be there]. Actually, some local synagogues conduct various services
from time to time on the beach. It is lovely to observe.
Sorry you have to endure this.
Love to you and your family,
After about , I was able to get up and put wash in the washer. A big event. This is pathetic. So not me. That little chore pooped me out and then I had to sit again.
So this is all new to me and I don't know what to expect from one minute to the next. They say it can last for up to 6 months after the last treatment; or you can have other permanent effects. I feel like they are microwaving me and who knows what is happening inside. As long as they don't do to me what they did to my mother. We hope upon hope they are being very careful because this is being watched and written up due to its "extraordinary rareness. I remind them all the time; like the resident called me from the surgeon's office and needs some pictures for a journal report they are doing. SO maybe if they know they are being 'looked over,' then they will be vigilant.
Since I have to avoid the sun, I got some big hats today. But I already have a big hat I made up years ago with tons of plastic fruit on top [like Chiquita banana]. Originally, before this all started this week, I was going to wear it to and from the car at the hospital but I just don't feel like the terror of this situation calls for humor yet.
We are glad to be at the shore. When we leave the hospital each day, the first thing we see as we go out of the door, is the water down in the bay, the boats, and the island with Longport or
This is the 'poem' my sister sent me:
burn up those bad cells
burn baby burn
burn those c cells up!
I don't think they give you a 'radiation holiday' unless you are in bad shape from the treatments...they push you and push you and give you the maximum tolerated dose. Not my usual way. I always take the smallest dose that will do the job. They consider your weekends off as you vacation. They are surprised I have so much pain already. They say it usually doesn't become this severe so soon. So what else is new. I had to remind them I am recovering from surgery in that very same area and it wasn't healed from that yet.
The medicine works for 3-5 minutes. Gots to chow down fast. And it still hurts inside. So I usually only take it when I eat. The fibrosis is the scar tissue that the radiation is frying into a hard who-knows-what. I don't know if it is permanent. I was too upset to ask but I will next time.
Alan and I dug out the forms [katas] we did in tae kwon do and reviewed them. During the treatment I try to go over the steps in my head, as if I were doing them; it takes immense concentration [some have 35 steps]. I am getting better at concentrating, if nothing else. Everything helps. So they are my trancing scenarios. And when I get better, we will do them on the beach.
got one more piece of encouraging news, sort of. The surgeon said
that the 2 lymph nodes that were taken out that were positive were involved
with the mass. The other 9 lymph nodes were negative.
appreciate all the sites and it would be a great help, though, that when you
find them, if you could just copy the stuff you want me to read. I am so
tired lately that all I can do is a few emails a night and then I don't have
time for the internet, too.
for all your help and most importantly, all the encouragement.
the trays fit perfectly - absolutely nothing to trim. They are very