AT LAST FROM THE LINEAR ACCELERATOR. NAZIS INVENTED THAT INSTRUMENT I
decided, each time they'd bolt my head to the metal table.
recovering from yesterday's visit up to the surgeon in Jenkintown,
especially when Dr. Kelly took the 'liberty' of surprising me with scoping
my vocal cords so he could look at them with a camera.
This was even too much for me. I tried not to go into a panic as
he described it, but it was nerve-wracking.
was concerned , like we are, that I am not able to talk yet. Three months
now. And he is concerned that I
still have no voice, have a terrible cough, and can't really eat
because my esophagus is raw and burnt, as if you swallowed drain
cleaner. The doctors say even though I am finished my radiation, it
will stay in the body and my symptoms will get worse for a month before I
start to heal. I did not like this at all. He anesthetized my nasal
passages and inserted into my nose, a foot long tube with a camera on the
end. The rest is not pleasant. He said they are 'sluggish' and
wants to see me again in a few weeks. Just want this all behind so I
can get on with my life.
think it caused irritation from him inserting the foot long tube into my
nose and down and around back into my throat. Because I have been
coughing continually and just had a dilly of a choking spell where I
couldn't catch my breath for too long. Ooh, what a feeling. I did not
like that test
after a 2 hour ride home, when we got home, again I was exhausted.
How can you get tired
sitting [not driving] in the car? Been sleeping, sitting some more, and tried to take a little walk but the humidity is bad for breathing. Plus that smoke haze is not good for lung-challenged people.
surgeon is also very concerned about my eating so little. And weight loss
[17 pounds, I think]. I try hard. But my esophagus is in such bad
shape [as he saw] and food kills going down. When I told him I was
able to eat 1/2 a steak sandwich WITH the bread, he eased up some. I
didn't tell him it took an hour. One time it took me 2 days to eat
air was less Smokey today but just as hard to breathe because of the
humidity. Most people don't have the air conditioners on here but I
cough less with it so I am staying in.
asked about the flushes. About a month after the surgery, they returned so
after carefully checking with all the drs., I went back on the hormone
replacement. No one can say for SURE that the hormones won't make the
tumor re-grow. They don't think they will, but no one knows much about this
type of cancer.
Kelly never says too much. He never ever even gave us any type of
prognosis. We like him a lot and think we are just beginning to understand
him. Just he wants to see me in 6 weeks. We gather he didn't see any real
problem to be concerned about yet, beyond the swelling, redness, rawness,
and sluggish vocal cords. It was hard to ask questions with that snake down
my nose and throat and when he was done I was in no condition to talk.
Today, though, I was able to rasp out a little more than a whisper, which
we think, my have been an iota of an improvement. Instead of Alan having to
put his ear by my mouth to hear, he could be 4 feet away. I can't project
any further than that. But by evening, I wore out my vocal cords again.
Back to a whisper - that bit of a rasp was such a tease. If I talk too
much, it instigates the coughing. SO I am going to have to be careful.
- when I see myself in the morning, it is depressing - I am still losing hair by the handfuls. But there are some people that don't say it once; they keep saying it over and over [I know people mean well and they really don't know what to say .]
you are in pain, though, you really don't care how you look; you just want
it to go away. It gets so complicated because I had my last treatment
about 2 weeks ago, and some people extrapolate and say that I must
feel good if I look good. That is when I get upset. I really don't
care if I have a scar or look good; I want to be rid of the cancer and have
it never return. That is what is important now and forever - not superficial
looks. Ida PInsky goes on and on EVERY TIME I SEE HER, about what a
fabulous job the surgeon did with the scar - nice but not important in the
Grande scheme of things. That is all she is interested in - one day she sat
on the beach bitching for 45 minutes to me how her nails keep breaking these
days. I bit my tongue but wanted to say, that I'd trade anytime.
You can understand - wouldn't she be lucky if that is the worst she has.
They can't see what is inside. Healing is a slow process because they did extensive damage so I give Death a kick in the Ass! The doctors say that when they give you radiation treatments like I am receiving, they give you the most your body can tolerate without killing you. They bring you as close to death as they dare. And my cells are still dying and I feel it every moment. Some people try to minimize how you feel with cancer to equate it with a flu or cold.
I am still getting over what happened last night at dinner; so I am scared
to eat so I ate very little. So we could get a change of scenery and
take my mind off of it, I told Alan we could walk to the beach. Well
after a half hour I said I wanted to go home. [he could have stayed,
but he wanted to monitor me]. First, some bitch was smoking behind me and of
course the wind had it blowing to me. I can't take it on a well-day
but now smoke and spices really choke me up good. Then I had to get
out of the cold wind [it was brisk today] and away from the 'stupid.'
People try to say something positive but as the bible says, there is a time
for positive and a time to just acknowledge when someone is in pain and to
not keep up that cheery optimism.
They all know my esophagus is burnt and the whole story how I can't swallow. SO they sit and ask dumb questions that we have answered for weeks. They just don't seem smart enough to understand that there is real physical damage there and it has to heal. Like "do you have an appetite," "why not eat Jell-O," "why don't you meditate before you eat..." Since I can't answer, I just sit there until I've had it. Didn't take long today. I just don't have the energy to explain each time, all the facts I explained already in the past. How could anyone coughing and gagging and hacking have an appetite.
But next week, I made an appointment to get my hair highlighted - maybe that will make me feel better. I do appreciate the compliments about looking good but it is really just very expensive theatrical make-up I found [read about it in the soap opera magazine].
At this stage of our lives, we are too old to deny ourselves anything. This illness has brought all that into the forefront and I no longer hear my mother or grandmother's voices in my head dictating to pinch pennies.
We have spoken to others who have cancer and they know exactly how I feel about not caring what something costs; recently my prescription, for the first time, was not in the prescription plan either. I used to be very careful with spending and now am changing my ways drastically. We are treating ourselves to a lot more niceties these days, not that we didn't before. But I'd shop in the market too carefully instead of getting what I wanted. You know, substituting cheaper [less tastier] brands for a special item. We have learned a lot this time around and have loosened up a bit in that regard
am not sleeping as much during the day now so I thought maybe I was starting
to get better and then something always happens to set me back. We were
really scared tonight. Speaking of which, I had physical therapy and
she always makes me feel so good afterwards but something must have swelled
a little more that usual. Because at dinner, we had a bad
incident. We are learning what swollen tissues means. In my case
the esophagus and trachea openings are partially closed due to the swelling.
So they are not as wide open as in regular times.
thought I was being such a gourmet cook; we barbecued onions and peppers on
the grill with mesquite. And then I cut them small, and put them in a
tomato sauce. Very tasty.
a very tiny piece of barbecued vegetable slid over my trachea opening and
adhered to it [like a magnet] and I couldn't breathe, for what seemed
like forever. Alan tried pounding my back and the Heimlich with no
luck. I had to write him a note what was wrong, I was wheezing so
badly, with no air getting thru. Finally we figured if I kept gargling
water, it would dislodge the piece and eventually it did. It was paper
thin and only 1/8 inch in diameter so we know the swelling is pretty severe.
I will have to be super careful now. That was a close call. Needless
to say, we ditched dinner after that. Now I am afraid to eat almost
once in a while I try to get back some spunk. Did you get to read my dog
letter that was printed in the CURRENT. If not, I can send it to you
in an email. The Mayor wants me to speak at a meeting coming up; if my
voice comes back, I will be happy to do it. But it is next week; I
don't know the chances. Some people that have called me have even given me
more ideas about how unsafe this dog situation is ---they are off leashes
all over the beaches and on streets.
went to our own beach today and it was much better. We sat by
for about an hour and then neighbors came down and sat with us. Much more
respectful. The wife slept. The daughter read so Alan talked to the
husband. Then some of the people from our other beach walked over to check
on me; they said if Mohammed won't go to the mountain then the mountain will
go to Mohammed. By that point, I was the only one awake. Imagine - I'm the
one who got the radiation but they all fell asleep on me. I bet they
'caught' it from me. The visitors just stayed a short while and we all went
back to resting.
Your are right about staying away from others. I don't get within 5 feet of
anyone; the last thing I'd need now is a cold or any type of infection.
That would do me in.
was a bumper crop of goodies for me. A few people were nice enough to
drop off little get well items today. One lady from the beach brought
an unusual variety of African violet plant . Another friend brought
this beautiful candy dish loaded with Hershey kisses. And this lovely
neighborhood couple brought over a copy of their church bulletin. They
had my name listed for special prayers for the sick in our community.
SO all this is very touching, to say the least. It is amazing what
people come up with to cheer me on. After we just got done
talking about the other kind of people, too. At least the nice ones
are in the majority.
is a whale swimming back and forth off the beach [it was on the news] - this
happens every few years. And today we went over to
REALLY had to. Gail Goldsmith came to the shore [
out of our car and this car pulled behind us and waved. They parked behind us and before we walked up to the boardwalk, Gail took off her wig to put on a hat. The poor thing has lost every hair on her head. I barely recognized her. She says the wig is too hot and uncomfortable which I can totally understand, since I get irritated wearing a hat.
The skin on her feet is all coming off. And the worst part was it looks like black and blue marks on her arms, but it isn't. This is going to be terrible - read with care; she has burns FROM THE INSIDE OUT, THAT IS HOW STRONG THE CHEMO IS. Talk about brave! When they inject the chemo, they are SUPPOSED to be extremely careful and place the needle in the vein. Because if any leaks out into the surrounding tissue, it causes severe burns. Poor Gail - what luck; they did a lousy job and the chemo leaked out. SO she is burnt. I hate cancer treatments - what they do to the patient is gross. There really is nothing worse than cancer. Everything else---there is hope for. This - you can go thru it all and still die.
Before we said goodbye we were all standing by the railing and the lifeguards whistled EVERYONE in from the water. Never saw that before. But WE DID SEE fins ---shark fins. They went out in the lifeboat and the fins were around it. It was wild to see this. Like watching a movie . We walked about 20 minutes and I whispered a lot. Too much. Remember she is my protégé but she didn't have to go so far as to get cancer because I
have it. She took the same courses I took in college; she likes to travel how we used to. She doesn't want kids. Probably she won't even get married. It just felt so bizarre talking about our illnesses that we both got at the same time.
decided since it was so hot today to go down and sit under the umbrella on
the beach for a while - it is like 20 degrees cooler there. So it is
refreshing to go and read a book. We sat on our own beach at the end
of our street. It was quiet and stress-free. Friday, we wanted a
change of scenery and to take my mind off of everything, so I told Alan we
could walk to the other beach we sit at in
Well, you told me ! You of course hit it correctly; I am as bad as the people I criticize, because I have set unreachable goals for myself - as far as the healing. As for the honey, you suggested. I bought, at the natural food store, a cough syrup that is honey, loquat, slippery elm, ginger, and a few other things.
You're right about the dumb questions. Today we sat on our own beach for a while to read our books. Then we took a 5 minute walk to the other beach. Why - I felt like a bit of exercise. The stupids were there. One guy says to me, "how bad do you feel that they are building a house next to you.'' I could only stare; we have always known the house would go up and between you and me, we welcome it. It will give us nice neighbors [we met them] and some privacy from the street and prying eyes. And shield our house from a lot of beach grime that blows over. But this guy kept on it; will you lose your view, I worry about you how you'd feel about this house, etc. Alan finally told him that it is meaningless, after what we just have been thru. Some things just don't matter at all and that is one. Finally he shut up. We left after 2 minutes. Next time I'll walk the other way.
for drs. visits - there is going to be a long time before I get a real
break. But at least I don't have to go every day like in the last 2 months.
Next week I see the radiation oncologist and he will give me scripts for the
blood work and a lot of scans and whatever else I need. I am taking this
week 'off' from all drs. [unless I got worse or something happened];
otherwise I'd go pick up the scripts and have it done. Just am so tired of
seeing drs., etc. that even though I still have to go for physical therapy
tomorrow, I told them I will only come in once a week. I just can't do any
more. And I need speech pathology but haven't called for an appointment
Alan has been great; he is so patient but feels helpless and just wants to
be able to do more to make me more comfortable. He gets me water, ice, ice
packs, bangs on my back, whatever. I feel so bad especially when I can't
breathe; and I cough and choke - it better heal and pass soon. This is no
way to live for him.
is so ironic and too funny to have another coinkydink, that Dr. Cassir
is your Aunt's dr. too. Even the drs. here use him for their dr.
last thing about the cholesterol; I have been on estrogen for 12 years
[and progesterone] because I get disabling heat episodes from the neck up
[another story]. SO the drs. felt estrogen would be extra good for me since
it controls the episodes and protects my heart. Now this news story came
out about how bad the estrogen is, carcinogenically speaking. I have to
make a real decision here.
accumulative affect seems to be pervasive with cancer treatments. And
then it has to work in reverse when you finally are finished.
I read the comment from your dr. about your throat and only seeing one
other case as bad, I knew how you felt. It makes me wonder how others
tolerate this better than us. It is hard to believe that 6 months ago, I
felt great - doing kickboxing, etc. The drs. did say they'd make me feel
lousy first. But nothing prepared me for all of this and then the visit
last Monday to the surgeon.
sister is right about the batches of home made food. I think of that a
lot - especially when I taught and the kids would bring in food that was
home made. You don't want to take any chances. That is how I feel; I feel
bad enough that I can't even fathom a simple cold or other problem on top of
what I already have. I can't breath well as it is; so I can't picture me
with a stuffy nose too.
is always so nice to hear from you, although I'm sorry to hear that
you're feeling so lousy. I know it is very difficult as you go through it,
and it doesn't help knowing that our state of health WILL improve one day.
It is just an accomplishment making it through each day. It is always with
hope that the next day will get better and we will be able to tolerate all
these side effects. So hang in there- one day we will have different types
no big deal - the 17 pounds was a cushion. I still weigh more than
when we got married. In answer to your question, liquids are tough [as well
as even just good old saliva] - it hurts going down. I do suck ice chips
all day but I have to have them dissolve and warm up before swallowing. A
Rita's water ice burnt my throat even more. Ice cream is too cold. I am
slowly figuring this food thing out - I have to be very careful. Especially
not having any barbecued and spicy and smoked items. And eat small amounts
and soft foods. I have been noticing little things all along. For
example, about a month ago, we bought a bag of those candies, circus
peanuts. Did you ever eat them - they are orange colored. Anyway, I
couldn't catch my breath - must have been a certain spice in them. I just
kept wheezing until it passed.
I had physical therapy yesterday and next week they will discharge me but I
have to do it every day at home. They want me to start speech pathology
next - they think it will help with the swallowing problems. So I do have a
script for the speech pathologist. There were only so many visits I could
do each week and the drs. felt it would be better to be done the radiation
first and wait till some of the edema in the neck subsided. Alan will call
for the appointment tomorrow. I want this entire week off - with seeing NO
medical people [except for one p.t. session]. It has now been 4 months and
I craved for my body not to be touched.
Usually I am on top of all the correspondence. If I don't hear from someone when I think they usually answer by, I send a note. But lately I have been living in a fog. I barely could hold my head up to read the emails and answer them [anything non-personal letter gets deleted immediately; can't even look at 'jokes' or want to at this point]. Maybe it will lift; I stopped taking the codeine pain killers and take only plain [like Advil, etc.]. I hated the side affects and feeling so out of it. And the email can come in on any one of 7 computers so every once in a while, Alan doesn't print one off. But if I can do it, I go around once in a while and check all the in boxes/ Checks and balances - not working, though.
To keep my mind busy is the problem I have. In my mind I want to do all these things and it runs away with itself. My armchair list. And then my body won't let me do them. I'll tell Alan 'well today we'll try a little bike ride and in reality I can't even sit on the bike and pedal most days. So that is frustrating
those choking stories you wrote are scary. Human bodies can be so
fragile that it always boggles my mind that we do as well as we do for so
long. And on the other hand, it is mind-boggling that the body can
take all that it is given sometimes, without caving in.
night, felt like being in the land of the living again .
It seems like a small thing ---until you get
sick. Longport had its annual picnic at the bay behind city hall. It gets bigger each year and this time they trucked in some mummer's. I see a big difference in my energy level though, since I stopped the codeine pain killers. The d.j. was so good. My feet work well so we danced a little; it is just my neck area that is causing all the grief. All would be well if I didn't have to swallow.
This is the only way I can communicate these days. And we both are getting so frustrated. It is too tiring to sit and write notes or even to just listen and try to show expression and nod [which hurts my neck a lot]. A few minutes is tolerable but when it goes on too long, I just can't do it. Until I get my voice back, we are going to have to limit that type of social activity. It doesn't do me any good.
night we saw all 4 Siravo's. They were down to
we went to Resorts where I got my hair cut [she said my back 'hairline is a
little high']. That is polite for half my head has no hair there.
It shouldn't bother me after all the other problems, but I guess it does.
Between Alan and I we have a full head of hair. The drs. told me
3 weeks after the last treatment I could get it highlighted soooo......I
did. Let's hope I have no effects from that one. It looks good;
everyone was saying they liked my hair 'natural' [they mean with a larger
percentage of gray] but I couldn't stand looking in the mirror at it and was
happy to get this done today. Tom Jones was appearing for a show
at Resorts [ Sat]. Our stylist does his hair, when he is in
town. Imagine, the lady who puts her hands in my hair has had her
hands in Tom Jones hair. I was disappointed he didn't come
into the salon when we were there.
complaining to another friend that I am getting really impatient to
get my voice back, etc. she was brilliant, as are most of her
lines......she wrote "it is hard to be patient but what choice have you?
So true - we loved it. Some things you can't rush, even if you try.
far as getting out, I have been forcing myself. The radiation gives
an exhaustion where you can't even will yourself at times to move. That is
because so many cells are being killed and it takes months for them to be
replaced by the body. At times, I can't hold my head up or keep my eyes
open. Can't even lift a hand. The drs. said not to push and just let my
body repair itself. That isn't me to just sit around. So last weekend was
my 'debut' and now I am paying for trying to do too much. All afternoon I
slept. It is like you are anesthesia or on potent pain killers. The good
news is that the cancer is feeling pretty sick too by that time and
hopefully has been sent packing.
Today was my one month check-up appointment at the radiation oncologist over at the hospital in Somer's Point and he prepared my list of follow-up studies. He wants the tests done next Friday, which will be 5 weeks after the last treatment. I need a carotid Doppler and subclavian Doppler [where the clot is] so first I go to the vascular lab very early. Then later that morning I have the CAT scan of the neck and chest. I am already feeling nervous as to what the scans will show now [and then in the months to come.] Well, let's get thru next week first. My friend Miriam told me to picture the cancer cells as the Al Quaeda while I got radiation and the rays were nuclear weapons. She said my burnt throat was 'bombed out' and when I can't eat she says 'wartime brings rationing.' She was great with providing me with all kinds of imagery. She is an artist. Everyone we know did something different. Let's hope it doesn't show any demon cells that shouldn't be there. I have worked very hard to kill them - the war better be over.
other saga was I have been trying FOR 7 MONTHS to get my HUP records
from '96b when that bastard J. French did in my trigeminal nerve. It turns
out to be a long story of stalls and delays and finally they told us to send
a check for $44.__ for the file. Very expensive photocopying, huh? But we
sent it because I was very curious.
The file never came. Alan called the other day and they said they didn't
get our check. We had just gotten our bank statement and VOILA - the check
was cashed by them. He was on the phone transferred from person to person
and going in circles. So I sent a Barbara-email and gave 'em hell and told
them I want the file fed exed to me, I want my money back as a gesture of
apology for aggravating a cancer patient, and I told them I planned to
report them to government and consumer groups if they didn't comply. The
file came yesterday and the check to day.
my neck really was tough to turn and move and it felt very swollen
inside and tight. Can't figure out why. I'll do more of the exercises more
times per day. Dinner didn't go down well so I didn't eat more that a few
bites of chicken, few bites of potato and half a roll. For some reason,
the esophagus just hurt too much to do much swallowing. Maybe the bagel I
had for breakfast, roughed it up some.
I bet you can relate to this analogy [I don't know if I had written you this] but at one time I felt like I was on one of those moving electric sidewalks and just let them do whatever they had to do to me. Stick my arm out ---they take blood or blood pressure; lay down---they lock me into a mask and radiate the bejesus out of me; etc. I never pictured myself being so docile and willing.
The drain problem you've had sounds familiar from hearing it from a lot of people with a lot of different surgeries. Like, a former student that had breast cancer had so much trouble with her fluid filling up after the lumpectomy. When they sliced my neck up, I had a drain afterwards, too. At first it was natural drainage. But when I got the blood clot and they gave me thinners, I hemorrhaged. SO it was too much blood for the drain so they had to hook it up to a pump. And then the blood clotted in it and they'd have to clear the line every few hours. How the residents did this is they'd come into my room and squeeze the tubing IN MY NECK with their fingers and work the blood clots over from one side of my neck to the other where the opening of the drain was. And I laid there like a lox and let them do it. I thought that was going to be the night I died.
Somehow my body knew it was 4 weeks after the last treatment and VOILA! I can talk. It happened yesterday. Each day, more and more vocal power is coming back to me. After 3 months of not talking, this is such a relief. I just knew this would happen - I JUST bought a white board for writing notes to people and lots of tablets. Best money I ever wasted.
To answer your question, I think I lost 17 pounds total. I tell all my 'fat' friends who are always trying to lose weight, that they shouldn't even bother since you really do need a cushion on your body of 20 pounds. Because you never know when you suddenly will need it. The first 10 pounds were from the surgery in March. Some days I do much better than others. It is not predictable. Last night I could barely swallow chicken and potatoes and some soft rolls I made. But today we went to a birthday party in Linwood, on the bay, for our friend's 2 year old so that was fun. They had lots of people, a cowgirl doing lasso tricks, a pony, 3 lifeguards at their pool, and tons of food. It was a scene. I managed to eat a mild honey mustard wing, a part of a roast beef hoagie, and a soft and warm large chocolate chip cookie [that went down the best]. Oh and let's not forget the birthday cake - it had to be all butter, it slid down. Those type of foods appeal more to me for some reason [a lot of 'healthy' items and fortified things just turn me off lately]. And I am bored by a lot of foods that I have overdosed on now for 4 months. If I never see Jell-O and Bill Cosby again, it won't be too soon.
Each day I force myself to go out and do something normal, like go to the market or take a walk.
mind runs away with itself of all it wants to do. My mind says I
want to bike up to the boardwalk and go here and there but my body won't let
me. After a trip to the market or any outing, I had no energy at
all and usually sleep the rest of the afternoon. Guess I have been
over-doing it. The body still has to replace millions of cells that bit the
didn't do much today; we hate this oppressive heat. So we stayed
in the air conditioning and did some cleaning and Uncle prepared some
photographs to enter into the art show here next weekend.
we wanted a change of
scenery and thought maybe it'd be cooler on the beach under an umbrella so
strolled down with 4 of our neighbors. Uncle bought a wagon so it is
easier lugging our chairs and umbrella. We sat about an hour and talk
a walk in the water. It was refreshing. But as we left to walk home, a
few steps off the beach, the heat hit like an oven.
I can get anorexic just hearing people talk about food; which seems to be their favorite topic.
Stupids......continued. Someone we know [a friend of my sister's]
called and she is a psychologist. She is a royal pain, too. It
started a few weeks ago : on the beach, she came over to me and in
front of everyone, made an ass out of herself. [p.s. - Alan told
her ALL the information each week, on the phone but she DOES NOT
listen]. She is a laughing stock and doesn't know it. People
could not believe it - and that she is supposed to know how to talk to
people, since it is her profession. I was trying to sit and not choke and
cough. And so it went until she came along and then I had had
enough. People tried to intercede [my friends try to do the
talking for me and limit the visitors a bit] and say some things to
her but Sheryl kept going on and didn't listen to them. Typical
Sheryl but I find it intolerable and now rude.
kept saying how great I look in her phony way, over and over and over [which
I don't- - - the stress turned what little hair I have left, gray] and when
people told her to stop it [because they know it upsets me ------ if
that is said only once, I can take the compliment, but if people go on
and on, I start to get stressed out because I feel horrible; at this point I
am not vane - I could care less about my looks or scar - I want to be rid of
cancer cells and just feel good - that is the priority]. So she kept
saying 'well if you look good then you feel good..." and on and on.
That has become a major pet peeve [did you know that if you look too good,
even at the drs. office, you will not be taken seriously - I have read
articles on this]. I took out one of my pre-written talk cards that
said "shut up" [I never used it before] but she didn't get it.
So I shooed her away. With my hand motion. I closed my eyes till
knows she annoyed me because she keeps calling Alan and bothering him.
And the other day she called and started up the same crap. I
answered [I have been talking hoarsely for one day now] and she heard my
voice and said, "Oh this is good, you are better; you're not swollen
any more, you are healed, you are on your way, how good you're doing,
etc." On and on. I listened a while and couldn't take
it since that day I really didn't feel good, I am still losing weight, and I
need scans on Friday which I am very nervous about. I couldn't eat
dinner due to the pain in the esophagus and she is bouncing off the walls
I said, "It is a shame for a psychologist that you don't know how to
talk to cancer patients." She interrupted me - not listening as
is her usual - and said how she calls all the time and she knows how to
talk. I said there is a time for cheery optimism and a time to just
acknowledge when someone is in pain and take that moment and hour and day
and help out in that regard. It was lost on her. I told her she was
clueless. And a few other things - then I knew I was wasting my
precious voice on this idiot. When I got off the phone, Alan said that
now Sheryl has 2 assholes, since I ripped her a new one. I guess I was
brewing and simmering because she bumped into a very old friend of ours and
told her NOT to call me or bother me. And I would have liked to have
heard from this person - it has been 10 years or so. What right did
she have to take it upon herself to decide that?
a shame; 99% of the people are wonderful and sympathetic and such a
blessing. It is a tiny percent that are so thoughtless. So Alan will
go back to screening my calls.
The clot was from the surgery. I thought I told you - they gave me blood thinners, as soon as they realized I had it but it was within a day of the surgery and then I hemorrhaged. My neck, around the incision, filled with blood.
is one of the nicest things that has happened in months; I have been
surprising people all over the place. The other day I walked up behind a
bunch of beach people and said hello and when they turned around and saw who
said it they all started screaming. SO others came over saying "what is
going on over here." Voices are so important.
here is another story, from another old 'friend.' She wrote me a note
how her mother's house was burglarized. This is the type
of language she used in her email - "Last week was very traumatic for
all of us; we still can't believe it; she almost fainted and nearly had a
heart attack; she is just sick; SHE WANTS TO KNOW WHAT SHE EVER
DID TO DESERVE THIS; I LOST 5 POUNDS; I AM LEAVING WITH A HEAVY HEART [on
It was shocking to read about her mother's experience, on one hand. I am sympathetic, of course. I never, though, used such overly pedantic language when I learned about the cancer. I felt it wasn't really called for.
I guess I am just super-sensitive these days but I thought her language was overly dramatic for the situation. I really appreciate when friends that don't have cancer, write things that happen that are bad and they couch them with, it is not like what you have. It shows such compassion. She will be in a real pickle if they ever had to deal with cancer and cancer treatments, if they get so theatrical over a break-in.
I would gladly give up any possessions, even sentimental ones from my parents, if my health would come back and they really did get it all. It gets to a point in life where everything has to be put in perspective - materialism goes out the window and prayers to be released from pain rule life. It is what is in the mind and heart that is more important when remembering those who have died - their possessions are only temporary in our hands. My friend Miriam wrote that her father said that no one should grieve over anything that can be bought.
a shame; 99% of the people are wonderful and sympathetic and such a
blessing. Like a couple of older people, who live just a few streets
away, made a special prayer for me at the Longport church by the bridge and
it appeared in their church bulletin. And another neighbor told me
they pray for me by name every morning and night. An old friend
dropped off a plant, last week and another a ceramic heart filled with
chocolate kisses. There's a neighbor we share watermelons with when
they are on sale [a whole won't fit in anyone's refrigerator these days] and
last week she wouldn't take her half of the money. It is a tiny percent that
are so thoughtless.
All your lovely offers - I loved [and laughed] over painting my nails. That would be fun - do you do sparkles. Do you have any secrets to it lasting more than a day - that would be a help to find a product that lets the polish stay on. The massage - you are such a character, a sweet,kind, thoughtful, wonderful character - [you don't want to take Alan's job away, do you?]. Food [we have TOOOO much already since I am eating less, it is so stacked up ]. Clean. Like you don't have enough to do. Such beautiful offers - thank you. You are very creative. Why can't more people be like you. You should start a school for 'the stupids.'
we went over to the gym so I could go some physical therapy; the
machines are the same as in the rehab center - I just use different weights,
much lighter ones. It felt good when I was done, but it doesn't last long.
The trouble with cancer is that the treatment [no matter which one a person
gets] leave them with physical differences than B.C. [before cancer]. I
guess I am feeling pains and discomfort now that I didn't before because the
pain killers masked it.
we met our friend Patty and her son for ice cream / yogurt
sundaes. That became my dinner. I have no appetite and nothing much appeals
to me these days. I try.
At times the pain seems to be decreasing - and then I have a day like today where my entire skin hurt. Can't explain it - all my skin hurt. I also just don't have much of an appetite and after a short time, food bothers the back of my throat & esophagus. I am still losing weight.
Each day is so different lately; sometimes it goes forward like my voice suddenly came back. But yesterday my neck really was tough to turn and move and it felt very swollen inside and tight. The drs. said this could happen... the radiation really 'cooks' the tissues and it is like overcooking chicken in the microwave. I'll do more of the exercises more times per day.
People have done such nice things that make us feel so good. Today, for example, my kickboxing teacher from the gym, brought us chocolate cupcakes and very special Lunch at The Ritz earrings for me. I can't wear them for a long time since they are huge; they would hang down and touch my new 'velvet' baby neck skin.
You are a gem. Thank you for having Dr. Cassir call me today. We couldn't put in words how much we appreciated this; we know how busy you all are there.
was so thankful I didn't have to wait until next week to know the scan
results - I was jumping out of my skin, very quietly and nervously, since
every one since January always brought us bad news. Dr. Cassir
said all is ok with my CAT scan that I had this morning. That was all
we wanted to hear.
we each made it thru this recent round of being tested. It is numbing.
We are just sitting here now......contemplating. Exhausted.
It was a nice change to hear positive news for a change - the first time in months.
other news was that I also had a Doppler of my carotids this morning [since
last November my right one was 50 % occluded]. Well, it isn't any
more. Miracle of miracles - they say it must have been the giganticus
growth pressing on it [like a kink in a garden hose], and that is what
closed it off temporarily.
you tired after all this entertaining? I can't even imagine it at the
present. I can barely lug myself around sometimes. I'll start to make
dinner and forget...till 2 days later.
suggestions from the therapist for swallowing; after she did the tests, she
knew my problem is 100% organic / physiological and I just have to heal from
the burns. Her tests for breathing and swallowing showed I am doing ok
in those categories, considering the damage. You don't see very much
swelling from the outside; but I feel it on the inside. At times, it
feels like someone has their hands around my throat.
takes a lot of literary license when he writes. Though with all this
therapy and treatment, sometimes I feel like Brooke Castle. With
physical therapy at Bacharach complete, it is nice that there is one less
place to lay down in each week. It got to the point where each
time I came home from one of those sessions, I felt like showering and
changing my clothes because so many people use the equipment and lay on the
tables that it could have spread germs I didn't need.
creep Arlene who used to own Nicole Dominique at
...get cancer twice. What can I say? I know that you were hoping for a different and better report. I wish that I had some magic that would make all this vanish. You have been so brave, forthright, and even awe-inspiring during my ordeal.
let me know if there's anything that we can do to help out. For
example, we would be glad to look up anything you need on the internet or
double check any information you want, get names, etc. Or make phone calls.
In the meantime, we'll start the prayers and send good vibes your way.
us know if you can get this. It is my original mask from the
treatments. Now it is "Cancer Art" that I will sell to raise
money for my Thymic Foundation. Alan is sending the forms in this week.
We need to raise money for printing literature and manning a website and
toll-free number. And we need to find scientists that can work on a
protocol [like a monoclonal antibody] for this type of cancer.
There is an art show here this weekend where I will enter [and sell] the mask. I decorated it symbolically [notice the teardrops under the eye opening ] and maybe it will bring someone good luck. Adam suggested doing the drawings to ward off evil spirits. Of course I couldn't do it until they were finished using it.
Did you notice on the mask the 'teardrops' out of gold rhinestones and the down-turned mouth out of purple rhinestones. Then there is the 'little Barbie crown' of mirrored rhinestone on the top of the head. It will be interesting to see how it is received by the throngs. Most people entering their work have watercolors of lifeboats, lighthouses, and beach scenes. Not us - always the differerent ones! I took my desert scene, a watercolor of a garden, and a photo of Mayan pyramid.
is another stupid people story. We needed to get some scans from our
he started in on how radiation and chemo are passé and they don't do it any
more in bonafide hospitals; they use chelation therapy instead. When
Alan heard that, we left. Quickly. The numbskull saw one TV show
so now he's an expert. I told Sherry yesterday, I couldn't figure out
how someone could say that and she said she doesn't get it either since his
wife had those very treatments for her breast cancer years ago. What a
boorish nudnick. He was so opinionated.
right - looks aren't important. Remember that old Saturday Night Live
Skit where the 2 characters kept saying, "it's more important to look
good than to feel good.'' Wrong! That's why I am overly
sensitive when people go on about how great I look [what'd they expect - a
corpse]. It's the inside of my neck that is still raw and painful, even
thought the outside and scar look 'lovely.'
We like how you always have a different routine; how do you remember them all. It is very impressive.
I was very careful tonight and didn't over exert. I did one set of each, which felt just right. You really know your stuff. I like the change......holding the weight a few seconds. My body is good now at telling me when enough is enough and I am listening. Being patient is one of my new vocabulary words and I am taking it slow. My piano teacher from 20 years ago used to say, "Go slowly like a snail and you will not fail" and it applies here in the world of exercise, too. I don't need any more trouble.
I am taking some vitamins but not as much as I used to take. The drs. say that while the vitamins help you feed and build your body, they also can feed cancer cells. Another new vocabulary word ---moderation. I will get Gatorade though; we used to always use it with our tae kwon do classes.
Did you see the news on the Siamese twins at UCLA? Well what I wanted you to really notice is the dr. who was the spokesperson. He is Michael Karpf, our old college friend [his wife and I were in Med Tech. together for 4 years].
- be strong and know we are rooting and pulling for you here. We are
praying for a good outcome. We are too tough to let this insidious
disease get us so we will keep adopting the attitude that 'it' will not
prevail. WE WILL. I know it is hard and many times I scoff at
the people that say that to me [easier said than done] but you know coming
from me, it is genuine and heartfelt and well meaning.
These are not idle words anymore, coming from me. I know in the interim, that each step you go thru is pure hell. Especially the family part, you described. Let me know how the talks turn out and how the various members of your family are - I feel badly for your mother since she is the oldest and has had her share of illness over the last years. You and John are in our thoughts constantly. It is so hard for John and Alan, too.
You were one of the people who told me to keep busy and go out for
walks,etc. every day. So when I couldn't, I tried to do other activities in
the house. The mask was one; yes - it felt good to embellish it and just
let it take shape. Now I am looking at it in a more positive light - that
it should be a good luck amulet. For someone else.
When you wrote about the monkey on your back, little did you know it would
be literally. As I read what the scans confirmed - it tore me apart to read
that all the vertebrae in your spine from top to bottom are affected. We
are both so sorry you are going through this. We hope that Alan can find
just the perfect new treatment to end this once and for all for you.
Miracles happen. Would Gleevak be useful in your situation. We know a few
people on that and similar.
Believe me, I never thought I'd be here this summer when I first heard my
news [and especially how rare it was and there being no protocol] but I am
still here to annoy people. And plan on just going from scan to scan. For
the few beginning months, I totally stopped shopping - nothing [I figured
I'd never get to use or wear whatever it was I'd be buying so why buy it].
At first when we traveled, we liked to keep busy, too but we always made sure there were lots of places to stay that were on the water. That is what we are drawn to. Now I am more agoraphobic than ever and so tired all the time that I never want to go anywhere again [we have gotten invites from friends and family all over the country and we just don't want to go anywhere]. There was a blurb in PHila. Magazine and the writer said "the shore is as exciting - in a different way - as the end - of - the - world places I tend to find myself in." I can't wait to get well again to throw myself into my old activities, though I'll never be the old me again.
is so sweet to have your family think of me as family. Since we are a
little short on family, it is a thrill to have a new adopted family to cheer
us along this new road we have never been on. It is people like you and
yours [and the smiles and kind words of our friends here] that give me the
courage to make this journey ---that no one should ever bear alone.