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Anniversary Update

Anniversary Update

March 28, 2004 - 5:41pm

Happy 2004!

This past week marked our 25th wedding anniversary - March 25th to be exact. That leads the good news we have to share in this note.

First of all, Ken is finally working again. On February 2, he began a full-time position with Verizon Wireless as a Senior Member of Technical Staff. In laymen's terms, he'll be a systems manager, as he's been for years. He's based in Orangeburg, NY (a 90-minute commute), where the computers he supports are physically located. After awhile, the powers that be will try and find him a cubicle in the Warren, NJ office; which is located about 20 minutes from our home. Needless to say, we've been busy trying to adjust to the "new hours" - especially the impact of traffic delays - this new schedule (of sorts) has produced. However, Ken loves his job in spite of the commute.

As for the ever-present medical stuff... (OK, so we've overdone that "in sickness and health" stuff all these years. )

Radiation therapy began shortly before Thanksgiving at Fox Chase and was completed about two weeks after Thanksgiving after 10 treatments. And THEN the hair fell out - this tme much more noticably than in 1982, so it's been back to turbans.

However, recovering from the effects of the treatments, mostly the effects of the steroid that really affected my legs, proved quite challenging. It wasn't unti late January or early February before I could finally move around the house almost normally - especially getting up from chairs or climbing up stairs. I finally got back to driving the car in mid-February.

We were also submjected to "New Horizons in Red Tape," courtsey (!) of Schering-Plough, which manufactures a brian tumor drug that was perscribed for me at the end of November. However, since my medical benefits (COBRA) ran out on December 1, we were told we should be able to get the drug for free under Schering's "Commitment to Care" program. Let's see... They finally sent us the paperwork around Christmas and Ken faxed them 18 pages right after New Year's - only for Schering to call us for itemized statements, then complaining one day later when Ken left out a line (which required yet another notarized letter). After another few days, I finally received the call that I was accepted at 100 percent.

The drug in question is called Temodar - or "birth control in reverse," as we've joked. You see, one takes pills for 5 consecutive days - and then nothing for the next 23 days. Strangely enough, even though I took an anti-nausea medicine prior to taking the drug each night, I would take laps to and from the bathroom only on the first night.

We saw Dr. Feigenberg on January 22. Apparently, the tumor that was targeted by the radiation had shrunk by 50 percent, but there were two small tumors on the other side of the head that were showing some limited signs of growth. The doctor was nontheless pleased, but decided to schedule the next checkup after I had completed three cycles of the Temodar to see whether the shrinkage was an effect of the drug or simply the radiation.

Our next checkup was Thursday, March 18, on the last day of the third cycle. This time the news wasn't as good: there was evidence of growth in all the tumors. So... It's back for more stereotactic radiosurgery. The procedure has been scheduled for Monday, March 29, at Fox Chase - hopefully, this one will go MUCH more smoothly than the last one, back in July!

So, we like to think we're making SOME progress... However, your good thoughts, prayers, etc. are most welcome.

We hope your 2004 has gotten off to a good start!

Another Long Day

Another Long Day

March 31, 2004 - 6:04am

Well, another round of stereotactic radiosurgery has been completed - in much less time and "supplemental agony" than the last one. :-)

We were told to be at Fox Chase by 7:45 yesterday morning, and thanks to what seemed like less traffic than usual, we arrived around 7:10 a.m. This time we were taken by 8, and the frame was screwed into my head before 10. I felt much better this time than last - no pain, no nausea. :-)

I was taken for treatment around 3:15 p.m., and it was all done by 4:30. Things went much more smoothly, and the frame only began to hurt as the technicians were beginning to set up for attacking the second of the tumors being targeted this time around.

We were back on the road for home by 5:15 p.m. Although I wasn't in any pain, I was very tired, and fell asleep by 9 p.m.

I've been feeling much better today. The post-op steroids aren't affecting me like the last time - at least I can climb the stairs and get up from the sofa with no difficulty; a great improvement over this winter. :-)

So, now it's time to get back to something resembling normal - and schedule the next follow-up; which will be sometime in May, once Ken can determine a suitable day with his current work schedule.