March 3, 2002 to March 8, 2002

 

 

3-3-02

 

It is fine for you to call anytime.  The message was meant for certain other people.  Someone called and was the first person in the whole last month to upset me.  I know she meant well but she was just being herself, telling me stories of other with cancer that were not the same as mine.  When we are well it is hard to take her but her comments made me tell her "I don't think I want to hear that story."   We'll save her for the phone.

It is of course hard telling bad news over and over; Alan is very upset and I hate him hearing it so many times. It intensifies the reality of it each time we say it and after we finally try to calm down a little, to bring it
up again and again all day and night is not helping us.   It is easier to send it email and then neither of us have to hear it out loud.

I am not as upset about the future, as Alan is right now, but I am more nervous about the pain I will have. That is my fear. And of course being at the mercy of the hospital until I am able to be on my own 2 feet again.

 

A few people told me that I should see this renowned herbalist here. . .  to boost my immune system before surgery. We went to the store and it turned out to be a pharmacy with an oriental man behind the counter.  There was a line waiting to see him.  I waited my turn and said the name of who recommended me. He said I'd need 2 sessions so he could learn what the drs. put me on and what treatment I will have.  I asked him if this was his pharmacy at one point and he said yes.  I asked if he were a pharmacist and he said yes.  And I asked where he went to college and guess where?  PCP&S! 1978.

I told him that I was chairperson of the department of clinical laboratory sciences there for 5 years. We know about 2 dozen mutual people, so we talked a bit about them first. He told me I wouldn't have to pay any fee for the sessions since I am from the college. I almost started to cry; I wish people would stop being so nice.  You know I am used to people yelling at me so this is scary.    When people are nice, you really start to get worried that something is seriously wrong.

He will do more with me this week but told me to eat fiber, plant protein, 3 liters of fluids a day, reverse osmosis water,  green tea [or the tablets], and a few other things.    He's a little secret in these parts that not
everyone knows about, except the locals.  He has 2 pharmacies, has been written up, and has a health food store or 2.  What a small world.  If you or Jerry ever need health advice when you are down here, he is an expert and has been written up [he may be a doctorate in pharmacy.

 

3-4-02

 

Alan and I are just thoroughly overwhelmed by you and others that are offering so much help.  There are no words to say that we just can not believe how people are rallying around in so many ways.  Rich has been just the greatest being a liaison [or as he calls it, an ambassador].   There is nothing else you have to do.  Really.  SO many have offered their homes.  Alan said to all the others how he has never really stayed in someone's home and feels funny doing so.  He says he doesn't want to be a pest or an intrusion on someone else's routine.    It is nothing personal at all; it is all his own quirk. 

 

I think he also wants to just go to a room at the end of the hospital day, shower and sleep.  Not feel obliged to talk or be sociable; he is very drained already.  And I know how he gets when he is tired and stressed so I would not push him in this.   All the little details - - - I have lists for my lists at this point.  As you know, going away a week, whether for fun in the sun or having a guy do an O.J. Simpson on your neck......  makes for a lot of planning in advance. 

Dear Norman and Rosalie:

 

Thanks so much; it is a comfort to know that if the surgeon is wrong and we do need blood, there are people around.

 

The surgery may be up in the air.  The gyn said the report is kind of dubious so she wants to see me Thursday and also I will see an oncological gyn later that afternoon.  They want me to get a PET scan but it takes days to pre-certify [can you believe this?].  That will be the deciding factor and I may not have the results by the exam.  The imaging center has to check medical records with the drs., show them to the radiologist, send them to the insurance company, and blah blah.  We are going to try to see if there is a way to shorten the process. Or see if U of P or Abington is any quicker.

 

How the PET scan works is any cancer cells 'light' up.  SO we would hope and pray that mine do not light up. 

 

The gyn said she still feels the report could be wrong since I do have benign cysts that have showed up on other reports for a decade.  It is so good to have good records and to have baseline readings.  I could never stress this enough to people, even young ones.

 

It is so odd that the CAT scan shows one large growth; my reports say that I have 4-5 so the CAT scan didn't say anything about those.  SO we are hoping that all 4-5 are being seen from some weird angle as one growth - the gyn said the other test is more specific.

 

If you'd pass this on to all my well-wishers, I'd appreciate it.  All your good thoughts really help at this awful time.  We are so blessed to know such wonderful and helpful  people.

 

Love,

Barbara

 

Subject: Blood Donation

Hi Barbara and Alan,

Rosalie talked to me about the situation and your need for blood. She also called Sue and told her what was happening.

I have type O and I'm very willing to donate blood when ever you want me to. Also, Harvey Skolnick has type O and is willing to donate. Just let us know where and when!!!!

Keep in touch and stay strong, it's all gone a workout.

Norman

 

3-6-02

Thank you for the adorable card with all the virtual hugs. These are the types of things that help so much. So many wonderful thoughts are being sent our way and when we get them, then I know that  we will be able to handle this. We just need the reminders.

 

We are trying only to talk to and email the people that are positive.  I can't take any negativity now.  One lady started off a story about someone with lymphoma and I knew where it was going so I said I don't want to hear that now.  It took about a month till the stupid comments came out; my 'student' Gail just had her first chemo treatment and she warned me about some of the comments [people mean well but can't believe how one remark can set you back into a depression].   At least I have learned something from this for when I talk to people in the future.  Alan is screening my email now so I won't have to read any negative thoughts. Actually I should screen his; he is very upset. An understatement.

 

As is typical with me, each day is an ordeal.   Things are crazy around here today.  My GYN (Dr. Wu) called my surgeon and then called us. She said that I needed to come in for an exam on Thursday at 4 pm and then have surgery on March 14 to see what was going on in the pelvic area. Needless to say that upsets everything, because that was in addition to my surgery on the 19th.  And only 5 days before the big one.  Seemed the surgeon wants a definitive answer  as to what the mass is before he can operate on me because that could change the course of treatment. She told him the only way is tissue biopsy.  

 

Meanwhile, 10 grueling hours later, Dr. Wu called and clarified this and said it was a biopsy of
the cervix [though out-patient and anesthesia required].  But the last thing I need now is a procedure that could lead to infection, etc.

 

Meanwhile, we had made arrangements to see a GYN oncologist already on Thursday at that same time -- at Jeanes. I contacted the specialist, who then called my surgeon. The specialist then told us:

 

I talked to Dr. Kelley today. Your wife does not need to see Dr. Wu on
Thursday. Just have her come to see me on Thursday at Jeanes as scheduled. I don't believe that we are going to find anything wrong with her gynecologic organs and I will be able to confirm this on Thursday.

 

This could be good news because, if the specialist is correct, I won't need the procedure done on the 14th and can go into surgery once on the 19th. If the doctor is correct, the pelvis thing is no problem. So, I am not sure what to tell Dr. Wu, but I feel that if we can avoid the other procedure -- that there is a chance it is not needed -- then we should take the chance and go for it.  What do you think?

 

Deep breath:

 

3-7-02

 

People are truly amazing.  I wrote this to someone:

 

  "It has been a stressful week; we think we are in a nightmare and will wake up. "

 

So she answered, the following, exactly what you and I were just talking about [things you don't even want to think about]:

 

You will, but it will be with a hose up your nose

 

 

Can you believe the gall?

 

Barbara

 

3-8-02

 

Well, you are 100% right; it is all by comparison.

Today went well, thank goodness. It looked like we were having a baby [the
tech called Alan "DAD" even] -  Our friend Sherry Welsh [who brought us a
chocolate raspberry 'orange'] and our friend who works at Jeanes, Lucille
[who brought us chocolate dipped biscotti] met us in the waiting room today
at the gyn. oncologist at Jeanes and they were good luck.  Dr. Hernandez
said everything felt normal; he didn't need to do a biopsy or ultrasound.
We were all exhilarated that we passed this test.  Thank goodness Alan
emailed him and the dr. answered and it saved me an out-patient surgery next
week.  Just goes to show you......

I went this morning for the PET scan. What a day.  They inject you with a
radioactive glucose solution and you have to sit still for 45 minutes.  I
brought nail polish to put on but they nixed that ---too much movement.  But
you are allowed to read magazines??????  It is an open scanner but a long
time on your back.  Ouch.  We hope the scan does not light up. That would be
very bad. Cancer cells 'light up.'  They were supposed to call Dr. Hernandez
with some results by the time I got there but they didn't.  So we wait for
those results [who knows what it will show] and we can't be too jubilant
yet.  I guess you never can be. The other shoe is always ready to drop.  You
just don't know when.  That would be a good definition of life. Well, I know
you know this.

At least I won't make that mistake again; you should write a book since you
have a good easy way of explaining all this.  I enjoyed reading the "Ellen
Miller Primer of Weaving."  We can go into business when this is over.  I
will make Cancer Chic Barbies ---you can weave little turbans and I will
have the factory make it so Barbie has hair that falls out.  This is called
putting your illness to work and coming up with something creative.

Love,
Barbara

 

 It used to be that our days were heaven and we'd have nightmares for dreams.
But now the days can be a nightmare and sleep is a relief because the dreams
don't venture into what we are going thru during the day.

 

Meanwhile the PET scan was approved. The test costs $4500 and the injection
they give you cost $500.  They wanted my credit card number in case I didn't
show; I said no.  I'll be there!  This new technology is expensive and we
hear it is not totally definitive.

 

 Today started out with a visit to the neurologist here; it was scheduled in
November for my trigeminal neuralgia.  But we spent the whole time catching
him up to speed with the new stuff.  He is a great guy and made a lot of
recommendations to us, in case we need them at some point.  He said he'd be
available to help us, if we ever need it.  He said whenever I have my
appointment, his blood pressure starts out normal and when it is over, it is
over the top.  I guess he only gets patients with migraines usually.  His
daughter just got her black belt in tae kwon do so we all have the
'special' bond.

Then we did an hour and a quarter kickboxing class and went out to
breakfast. It is like the set of 'friends'; everyone in the restaurant talks
to everyone else.  Kind of nice and small townish.  Speaking of which, when
we got home, after we got the PET scan results, the Mayor called to see how
I was.  We had a good laugh over this.  Like this would have happened in
Phila.  Right?

Maybe tomorrow we will get that walk in on the beach already.