From: edg@netcom.com (Ed Greenberg)
Subject: A Bout with a Brain Tumor
Date: Thu, 09 Apr 92 19:54:26 GMT
Organization: Netcom - Online Communication Services  (408 241-9760 guest) 

I'm writing this in response to a request from another netter to post 
some cancer success stories.  I hope that this story can be of some 
inspiration or encouragement to others. I'm certainly blessed to have 
been a part of it.

In April, 1986, my wife, Roseann, started complaining of headaches.  We 
were on vacation in New York for Passover at the time, and both of us 
wrote it off the holiday stress, combined with allergies.  We completed 
the week in New York with lots of tension and stress between us, and 
returned home to California.  Roseann was still having headaches, and 
sought an appointment at Kaiser Permanente, our HMO.

Roseann got the run-around at Kaiser.  She saw several physicians and an 
allergist, most of whom told her that she had a sinus infection.  
Meanwhile she was becoming more and more dysfunctional.  She was staying 
home from work, or coming home early on the few days that she tried to 
go into the office.  She was also doing nothing to take care of herself 
or her surroundings.  I'd come home from my work and find her sitting in 
the midst of her breakfast, lunch and snack dishes and half finished 
food.  Once she was cold, so she started the oven and left it open, 
running on broil.

Every few days we'd go back to the doctor.  I'd always ask the doctor 
under what conditions should we return.  In other words, what were the 
indications that she was not getting better.  One problem was that 
Roseann could not adequately communicate with her doctor.  She would go 
because I insisted, but would not offer any complaint.  I new that 
something was wrong, but had no idea what.  

Finally, in early May, 1986, I went to take Roseann back yet again to 
see about her headaches.  She wouldn't get dressed, and couldn't walk to 
the car without help.  I took her, in her bathrobe, with a cane that we 
had around the house.  When we got to Kaiser, she wouldn't get out of 
the car.  I got a wheelchair and wheeled her (and her cane) to the 
appointment.  

Fortunately for us, we had broken the cycle of the HMO.  One of the keys 
to good service from an HMO is to see the same person twice.  No medical 
professional will to anything significant on the first visit.  Since 
they haven't seen the patient, they always try something minor and tell 
you to come back if it doesn't get better.  When we reported for our 
appointment, it was with the same Nurse-Practitioner that had seen us 
the previous week.  She took one look at the wheelchair and the cane and 
took action.  One hour later, after 30 days of inaction, Roseann was in 
a CAT Scan machine, and 36 hours after that she was in brain surgery.

The surgeon reported finding and removing a Gleoblastoma (sp?) the size 
of a "racquetball."  It was unencapsulated and was removed until "white 
matter was encountered on all sides."  

The evening after surgery, Roseann woke up in Intensive Care.  She says 
that her first thought was that her headaches were gone.  I was admitted 
to the ICU to see Roseann at about 5 PM.  I went in and held up a Vulcan 
Salute and asked, "How Many Fingers?"  Roseann answered, "That's not 
damned funny!"  Both of us report that at that moment we became aware 
that everything was going to be all right.

Roseann insisted on getting out of bed that evening, to the 
consternation of her ICU nurses and the surgeon.  He told her to stay in 
bed, but she was insistent.  At that moment he told the nurses, 
"anything she wants to do is OK."  I think that a wise physician knows 
that there are some patients who are operating outside normal 
parameters, and interfering with them is interfering with their natural 
recuperative abilities.  

Roseann was released from the hospital one week after surgery, on the 
second Wednesday of May, 1986.  The following Saturday, she made an 
appearance in the Synagogue and performed the ritual for a person who 
has been through a harrowing experience.  

Roseann was told to report to the University of California Medical 
Center at San Francisco.  UCSF was to prescribe post surgical procedures 
to fight any remaining cancer.  They asked us to sign our willingness to 
participate in experimental procedures and we did.  During eight weeks 
of radiation, Roseann was made to wear an infusion pump that provided a 
constant drip of medication     After one month of chemotherapy, in 
October, 1986, Roseann returned to work as a legal secretary.  Her 
employer had not been able to save her old position, but had other work 
for her to do. During her radiation, Roseann was responsible for 
reporting to the hospital every day for treatment.  Those of you who 
have been exposed to this know that it is a most debilitating 
experience, yet she did not miss one session.  One day, when her car 
wasn't available, she rode her motorcycle to the treatment.  After the 
pre-cancer experience, Roseann's determination was startling. 

During the following year, Roseann worked as a legal secretary, 
commuting 20 miles each way to San Francisco, while receiving ten 
monthly cycles of chemotherapy.  She had several medical problems during 
that year, mostly related to the chemo and the Hickman catheter that had 
been installed in her chest.

Next month marks five years since Roseann's surgery.  She received six 
month CAT scans for the first three years, then yearly scans.  Earlier 
this year, her oncologist called her in for a visit, but it was sparked 
only by a request from UCSF to follow up on their prescription.  In 
these five years, CAT scans have shown no cause for alarm.  We are 
getting confident that this isn't coming back.  

The moral of the story is that it IS possible to beat a cancer 
diagnosis.  Roseann is alive, healthy, and living a life with a normal 
life expectancy. 

On the other hand,Roseann is not 100% healthy as she was before.  She 
seems to have no resistance to illness, and is chronically tired.  On 
the bright side, she is much more in tune with her body and it's needs, 
as well as more aware of the intangibles of life, such as family, 
nature, religion and the need to live each day to the fullest.   

The medical profession seems unwilling to admit the damage that is done 
to a patient that goes through radiation and chemotherapy.  Certainly 
it's better than the alternative of recurring cancer, but in Roseann's 
case, she's been dismissed as 'cured' when she still suffers from the 
effects of the treatment.  Roseann's fatigue has made it hard for her to 
work reliably, yet she is not considered disabled.  I believe that she 
belongs on disability, but we have no medical resources that will even 
discuss the lingering effects of treatment.  

We are also faced with the problem of medical insurance.  When I was 
laid off at my job, I was fortunate that my new employer also offered 
Kaiser Permanente.  I am given to understand that if I ever let my 
Kaiser coverage lapse, Roseann will never get medical insurance again.  

One side issue to be discussed is that of the Kaiser HMO vs. private 
physicians.  Frankly, I believe that we received the absolute best of 
care, once Roseann had attracted a practitioner's attention.  Overcoming 
the problem of seeing the same person twice is the greatest obstacle to 
quality care, yet seeing a practitioner twice on 'short' appointments is 
virtually impossible, especially if you have been dealing with the 
medical office during off hours.  Once we had their attention, Roseann 
got the best of diagnostic and corrective care.  There was no question 
that they were throwing every resource available at saving her life, and 
combating the recurrence of her cancer.  We wouldn't trade Kaiser 
Permanente for other care even if we could.  We have, of course, 
accumulated lots of experience in working the system. 

I hope and pray for others to have as good a result with their 
afflictions as Roseann did.  Good luck and good thoughts to all of you 
reading this.  
-- 
Ed Greenberg 		| Home: +1 408 283 0184 | edg@netcom.com
P. O. Box 28618		| Work: +1 408 764 5305 | DoD#: 0357
San Jose, CA  95159	| Fax:  +1 408 764 5003 | KM6CG (ex WB2GOH)