response 400 of 475:

May 24 19:04 UTC 2004

Today I saw the doctor.  A nursing student did the weighing.  My pulse is 77
(normal being 70-100 or so;  Jim thinks he is 60) and blood pressure the usual
105/60 but I think she pumped it up to 160 to start anyway.  This time they
did not measure blood oxygen.  A medical fellow did my exam and answered some
questions.  The loss of taste is also related to nerves and they can take 6
months or longer to grow back.  Chemical menopause has a 50% chance of being
permanent at my age.  I won't notice any symptoms if I get a relapse, before
the CT scan catches it.  I don't need 10 years of scans, just 5.  After 5
years the chance of a relapse is very low.  After 2 years I have an 80% chance
of being cured (no relapse).  After one good PET scan considering other
factors (I was in a really advanced stage) my chances are 60%.  The doctor
did not want to tell me this and immediately pointed out that this is better
than half.  I told him I already read these odds and knew there was a backup
treatment that was not so much fun.  He told me he could usually tell from
a gut feeling whether someone was going to do okay and I was going to do okay.
I thanked him for being so optimistic all along and not letting me know what
bad shape I was in to start with.  

We ran into the mother of the boy who was in there frequently my first few
times and he has also gained back 20 pounds, but still has to come every week
for blood work.  He also has hair now.  

My next appointments are mid-late August.  While waiting for them we
recognized a woman we had talked to last time.  We will see her again in
November as they are now coming only every 6 months.  

We said hello to the cancer center nurse and her mother is getting a new
treatment and was able to go home.  I told the pharmacist that my voice is
back.  He was the one who discovered it was probably a drug reaction.

We ate our picnic of rye crackers and ajvar at the cafeteria, with some cans
of juice Jim took from the cancer center and a plate of brown noodles with
vegetables and white sauce.  He said the red sauce did not taste like anything
and at least you don't expect white sauce to taste.  

I have to get an IV again next time(s) because of the persistent small masses
in the spleen but I have a slip to get the blood draw at the same time again.
If all goes well I would like to go on vacation for a couple of weeks after
the next followup exam (late August to early September) if I am strong enough
in the legs by then.  (And able to sleep on a harder surface).

response 402 of 475:

May 25 16:19 UTC 2004

eye-var.  j pronounced like English y.  Turkish word also used in in former
Yugoslavia.  This jar had red peppers and eggplant, some have no eggplant.
Usually also garlic and lots of olive oil.  Most versions are with hot peppers
but we found two without at Aladdin's Market on Packard.  Also good added to
beans and rice.  

Today I tried to find out by a few phone calls if a mammogram is needed when
one is getting frequent CT scans.  Someone said that if a CT scan finds
something suspicious they also order a mammogram.  I should ask my doctor.

I found another online report of 24 people with my type of lymphoma who had
good PET scans (and 11 who did not, 10 of whom had relapse).  Of these, 3 had
relapses at 8-11 months and one at 20 months, the rest were okay. 5/6 again.
I will try to not worry until the third CT scan at 9 months.  PET scans cannot
catch really small tumors, and it probably takes 8 months for them to grow
large enough to be noticeable by CT scan.  A third study reported 85% of
people with good PET scans were okay for 2 years.  After 2 years a relapse
is quite unlikely and after 5 years extremely unlikely.  

20/35 is about 60% of the total group who were okay for 2 years.  Of the group
with good PET scans it is again about 85%.  In any event, over 50%.  Maybe
I will celebrate after the fourth scan, next May (or for my 55th birthday,
which makes me eligible for chair exercises and a senior discount card at Old
Country Buffet or whatever they call it now).  

response 404 of 475:

May 25 23:20 UTC 2004

For the high risk group (probably me as I had an advanced stage) 2 year
progression free survival was 60%, for the low-risk group over 90%, but the
60% was only for those who had a good PET scan half-way through treatment.
I did not have a PET scan until the end but I had a good CT scan after 6
cycles at least - all the masses noted then are the same size now and were
not abnormal on the PET scan.  

The reason for the radioactive antibody in tough cases is that when tumors
are large the antibody only kills off the outer layer, but if the antibody
is radioactive and binds to the outer layer, it also kills off nearby cells.
Unfortunately these are not just tumor and not even just lymphocyte cells so
they don't like to use that method if anything else can work.  

Do you have ajvar/aivar in England?  

response 406 of 475:

May 26 01:33 UTC 2004

Try also Turkish and Greek and Hungarian stores in addition to Macedonian,
Bosnian, Serbian and Bulgarian.  We made our own from red peppers, baked,
skins peeled, ground up, add fried garlic and olive oil and if you like also
roasted peeled mashed eggplant.  The commercial ones also add salt to ajvar.
The peppers smell wonderful when baking.  In the fall in Macedonia people
would roast them on large flat metal pans over fires.  We used the oven and
a cookie sheet.  You can also put them on the European style electric burners
directly.  The peeled peppers are a favorite late summer salad, with raw garlic
and olive oil.  Early spring salad is garlic shoots.  Anything green was
welcome after a few months of no fresh vegetables except potatoes.  In the
fall everyone pickled peppers, cabbages, and beets, and canned tomatoes.  This
explains the popularity of stuffed pepper and stuffed cabbage, which can be
made from the pickled vegetables.  Pickled cucumbers were less common there.

response 408 of 475:

May 26 04:13 UTC 2004

We buy our red peppers and ajvar in Middle Eastern stores run by people from
Jerusalem, Lebanon, or Iraq, who import things from Greece and Turkey.  The
olive oil from Lebanon is excellent.  Where do you live in England?

response 410 of 475:

May 26 13:29 UTC 2004

That's "Ashington, which is near Newcastle", not *"Ashington-near-Newcastle"

response 412 of 475:

May 27 18:00 UTC 2004

Heh. I just read "Romulan".

response 414 of 475:

May 28 12:32 UTC 2004

Any current evidence of chemobrain?

response 416 of 475:

Aug 17 03:11 UTC 2004

This month I have lots of doctor's appoints.  I had a mammogram (very quick
and only hurt for a few seconds) and a general exam with pap smear to check
for cervical cancer because chemotherapy knocks out the immune system and
there is a virus which causes cervical cancer and might have gotten loose.
I was told to also get checked for B12 just in case the cracks at the corners
of my  mouth during chemotherapy and decreasingly after that were due not to
therapy (most likely) but to B12 deficiency, and a routine cholesterol test,
and a tetanus shot.  

I checked at hospital and physician billing today and I am way over the $400
for which the insurance will pay 80% so I did not want the cholesterol test.
They did the three standard blood draws for cancer checkup from the IV but
would not do 2 of the 3 others (TSH too) without an official crossout of the
cholesterol test so I had to go get a nurse to sign that and then get a second
blood draw.  Ouch.  I wish it were possible to find out what things cost
before they ran up to $795, and how much the PPOM discount is.  They told me
45% but Jim's was nowhere near that (it just came today).  I could easily
have postponed the tetanus shot and mammogram until next year.  There was a
$165 charge for use of the facilities in addition to the general exam (about
$200), a $70 charge to read the mammogram in addition to the mammogram (about
$200).  Tetanus vaccine $30 injection $25 (it took less time than the $3 blood
draw).  Dept. of public health might have been cheaper ($15 for flu shot) but
it is a 3 hour round trip to Ypsi.  

Next Monday I see the doctor.  A friend will email me my CT scan results this
week.  

While waiting around the CT scan area (in the hall to avoid the TV) I talked
to someone in an electric scooter (and helped him by opening the bathroom door
so he could get in and out because the clearance is not enough), the sister
of someone getting checked to see how far her brain cancer has spread so they
will know if it is operable, and someone getting CT scans monthly to make sure
his second course of chemo is not damaging his lungs and that it is working.
He had a relapse so they are doing something stronger.  At one point all his
skin peeled off.  If this works he will do it the rest of his life.  I forget
his schedule, I think it is the first 4 days of each 4 weeks and they give
him good antinausea drugs but his blood cell counts stay low and he bleeds
easily.  He is very happy medicine has improved enough to keep him alive. 
We ended up getting IVs at the same time.  Mine bled all over the floor (well,
all over a bit of the floor) but did not need redoing.  

Again, I feel luckier than most of the other people there.  
We are goofing off the rest of the day.  I learned to cut and paste with a
mouse in Opera for linux and was teaching Jim how to use his WCC webmail and
Opera mail when the WCC smtp server apparently died.  

Taubmann Medical Center has floors numbered (from the bottom):
B2 B1.5 B1 B.5 1 2 3.  We saw most of them going back and forth between
billing offices, internal medicine (3 times) and CT scan (twice).  They hide
all the construction on the half floors.  Or maybe it was B2 B1 .5 1 1.5 2
3?  Jim was leading.  Better than just sitting around worrying.

My symptoms of chemotherapy are nearly all gone.  Still have hot flashes and
it still hurts to sit but things taste normal, my  hair will need cutting soon
for the first time in a year, and people have been telling me how good I look
(nobody told me earlier how bad I looked) as well as admiring my glasses
(designed to fit under a gas mask - I lost the others somewhere).   You can
mail order new lenses (prescription) for $36 plus $5 shipping, much cheaper
than a tetanus shot.  Exams run $48 (Ypsi) to $80 (Main St. Ann Arbor).

We had a small picnic in the 'garden' (sign labelled it that way) next to the
hospital and Jim picked french fries and ate them.  I had to fast 6  hours
for the CT scan.  

For B12 the online site said to fast 12 hours, the doctor said 6, and the
library book said it is usually tested together with folic acid (for
pernicious anemia) and you fast for folic acid, not for B12. 

For cholesterol the book said fast 12 hours, the online site ditto, the doctor
6, and a friend's doctor said the fasting is only for triglycerides not total
cholesterol.  I skipped the test.  The insurance will pay 80% next year.

response 418 of 475:

Sep 7 23:34 UTC 2004

Big surprise, the mammogram was paid 100% by insurance (no deductible) but
I still don't know what happens when the preventive part adds up over $400.
I guess the deductible on preventive is only if you have not yet gone over
your deductible.

Yesterday we reached my fitness goal for the summer.  Biked to Independence
Lake (the closest swimming beach, about 15 miles over dirt roads and some
hills), swam 3 laps (about 500 feet each?), walked all the trails there (saw
lots of frogs and rabbits), left at 7:10, switched to paved roads at N. Maple
because it was dusk and gravel roads with ruts are no fun in the dark, and
got back at 8:40, beating our normal 1 hr 45 min timing.  Took laundry off
the line.  Around 8:50 it started to pour.  
My arms are still pretty weak.  I wish there were a beach closer to town.

Someone gave us a used baby jogger but it is double wide.  Jim tried a
different hand truck and says the trick is to keep the center of gravity below
the wheel axles by using larger wheels.  

I may try doing pushups against the wall, and shallow knee bends.

response 420 of 475:

Nov 16 18:13 UTC 2004

CT scan this morning.  The usual blood all over the place when the IV was put
in but it worked on the first try.  I have been told I have good back
pressure.  While there, we talked to someone who is getting a CT scan of his
knee so they can make a mold to put his knee in when he gets it irradiated
for sarcoma that the surgery missed, for 7.5 weeks five days a week.  Why skip
weekends?  He is going to drive 45 miles each way every day, and the radiation
lasts 30 sec to 1 minute.   He hopes eventually to use the knee again to play
golf, and was showing us pictures in a magazine of how to adjust the screws
in a golf club to  compensate for individual types of swing.
We had a picnic lunch at the cafeteria.  No more noodles so we got the two
frozen vegetables and a peppery potato $2.79 special to have with our
breadmaker bread and milk.  I have to drink lots of water for a day.  
Sunday the MRI, Monday blood draw and doctor's visit.  I don't expect things
to go wrong.  From one website I read relapses in cases like mine are most
common from 8th to 14th month so after next May my chances improve.  This is
the 9th month after the PET scan.

response 422 of 475:

Nov 17 03:08 UTC 2004

The CT scan is supposed to pinpoint where the sarcoma regrew after surgery,
and then I would guess they mark that on the mold so that they can aim the
radiation very precisely to kill just the sarcoma.  I did not get to ask more
questions because I had to go off to get the IV.  A doctor friend of mine
emails me the results within a day or two so I do not have to wait until next
week.  For some reason they don't want patients to read these - perhaps
because many won't understand anything.  

I am betting that my enlarged thymus is back to normal size as I have not felt
pressure in that area since early October.  Last time they told me I could
not possibly feel the enlargement.  I could also tell when the fluid around
my lungs was gone before the CT scan indicated that, because it stopped
hurting.

klg - could you feel your thymus was enlarged?  And didn't they do a CT scan
before they irradiated?

Today I got another reminder in the mail about this morning's appointment,
when I got home (along with reminders of the next three appointments Sunday
and Monday).  Jim gets notices of blood donation dates at the Chamber of
Commerce that arrive the same day.  Is there some place to donate at the
hospital instead?  It is very difficult to pry from the Red Cross information
about local donating events.  Chamber of Commerce is the closest.  Once I
managed to get someone to promise me to email this information from Red Cross
and she sent at Excel file that I needed to convert to something readable.