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LONG Overdue Update

July 27, 2003 - 7:42pm

We hadn't realized it had been soooo very long since we last posted any news from here - sorry 'bout that! Perhaps we kept putting it off so we could possibly combine it with some better news - like both of us finally being fully employed.

Alas, both of us are still unemployed. It's been over a year since Helena was downsized; and Ken's contract with ExxonMobil ended at the end of January. Although Ken has picked up an occasional short-term job (like a 2-3 week or one- or two-day deal) and some web design work, these don't pay enough bills, sad to say.

Until these past several weeks, Helena hardly received any phone responses to the many resumes she'd been submitting. She finally had some real face-to-face interviews in June, but no offers. We like to think we're inching ever closer to offers, but the wait is certainly frustrating. Helena's unemployment benefits ran out a few weeks ago.

Perhaps the one good thing to say about staying home like this is that we didn't have to worry about driving to work (or to a train station) in this winter's "lovely" weather. :-) Oh yes, Helena has completed many more stitching projects this year. We promised the folks at our favorite framing shop that some day they'll have lots of work to do.

As a result, there was no vacation away from home this summer - first time since we were first married that we spent the entire month of June at home. Very strange feeling, that's for sure.

Of course, one thing that has remained somewhat constant has been the tests and checkups. Fortunately, the lung tumors have remained stable, thanks to Gleevec. :-) And the March brain MRI, the first since the November surgery, was clear, to the delight of all.

June, however, proved to be another matter. This MRI showed a 1 cm nodule that was deemed "very suspicious for recurrent tumor." (Let's say this report wasn't exactly the birthday present Helena was hoping for.) We saw Dr. Sen, the neurosurgeon, in early July and he recommended stereotactic radiosurgery since the nodule was so small. At this point, anything that can be done to prevent another trip to the OR...

So we called Dr. Marshall at St. Peter's the next day - only to discover that he was about to leave that facility. Fortunately, we were able to get an appointment for the following week. He seconded the recomendation for stereotactic, adding that the nodule was probably in a very good place: "floating around in the middle of nowhere." Actually, it's sitting in some fluid in a cavity left from the last operation; not impacting anything critical.

Dr. Marshall arranged for us to see a colleague at Fox Chase; so last Monday we met Dr. Feigenberg. Yes, we broke in yet another doctor. :-) After discussing the history and Fox Chase's way of performing this procedure, we were off to contemplate this next adventure - while everyone else was getting their calendars in sync.

Sooo... Tomorrow it's off to Fox Chase for an MRI. Assuming there are no surprises, the procedure will take place on Thursday, July 31. Like the last procedure, back in January 2002, this will be one long day; but this one isn't supposed to last quite as long. (For one thing, we don't have to arrive until 7:30 a.m., compared to 6 the last time.) Nevertheless, Ken plans to get lots of web design work done on his laptop, and Helena will probably catch up on videotapes. (We were told to bring videos, but if there's a TV with CNN...)

And that's the latest, such as it is, for now. Hope all's well with all of you!

TWO Long Days

August 4, 2003 - 5:47pm

Well folks, We've managed to survive this round of stereotactic radiosurgery. We'll see how well things REALLY went when it's time for the follow-up MRI in three months.

In the meantime, let's just say this was more complicated than anticipated - and certainly not as pleasant an experience as I had had in January 2002. So, what happened this time???

I had undergone a brain MRI on Monday to give the docs a more current basis to work from. Turned there were now more nodules to be dealt with. Whereas the original nodule was 1 cm, the new scan showed as many as four others scattered about. All were very small, on the order of 5mm, and Dr. Feigenberg, the radiation oncologist, was still optimistic he could zap all of them.

We headed for Fox Chase beginning at 6 on Thursday morning. Since Ken has an interview tomorrow morning in King of Prussia, PA, this was a good opportunity for him to get some idea of what early-morning traffic was like in the Philly area. We managed to arrive at the hospital about 15 minutes earlier than our usual 90 minutes. Although we were supposed to be there by 7:30, those 15 minutes turned out to mean little - the staff had yet to arrive. The nurse showed up around 8, and the neurosurgeon finally arrived just after 9. We began to get the idea this day was going to be longer than we thought...

Instead of a regular hospital room, with bed and regular TV, we were placed in an examining room equipped with a video player for the day. We were told to being tapes with us, which we did. And, of course, Ken had his laptop with him; and he got lots of work done.

The IV was finally started, but for some reason my veins didn't feel like cooperating, which made the preparation that much longer. (I had a similar problem on Monday.) Then came the most painful part of the procedure - getting that stereotactic ring screwed into my head. Think of getting more shots of novocain than you'd ever want to experience and multiply it by some large factor. Although this WAS the worst part of the deal (at least up to that point), after about a half-hour or so, the stuff sitting on my head was more tolerable - actually, much less uncomfortable than I had feared.

I finally arrived at the CT scan at 10 a.m. for not only the usual round of pictures, but also some extra prods through the helmet placed on top of the ring while the doctor took measurements that would eventually be fed into the computer to determine how I'd be treated later in the day. It was 11 a.m. by the time this was all over with and I could finally have something to eat. (I couldn't have anything to eat or drink after midnight, and I was really hungry by then.) Like last year, the ring came just close enough to prevent me from fitting a pair of glasses through it; so as I had expected, I spent much of the time watching the tapes we brought.

By about 3 o'clock or so, I was beginning to feel the discomfort I recalled from last year. Since Fox Chase is very cognizant of pain management, I was offered a choice of either an injection of painkiller or percoset. Since I really didn't want another shot (the ones I got when the ring was screwed in were bad enough) and percoset and I got along (or so I thought), I opted for the pill. Eventually, we got some cake from a staff member's going-away party that put a little more food in me before the procedure, which had yet to begin.

About 4:30 or so, I began to feel a slight wave of nausea; but some water and a mint seeed to stave it off. Little did I know the worst was yet to come...

I was finally taken for the actual treatment just before 5 p.m. Like last year's event, it's a very open situation - not the claustrophobic's delight of the MRI or even the donut hole of the CT scan. Ken took pictures of me (for future posting on the web site) wearing the ring, and the plastic "space helmet" that's used for taking measurements. (At first he thought it resembled a colander, I thought it was more like an old-fashioned hair dryer, and the staff referred to it as "the hair dryer.") I laid on a table with the cages on my head while a linear accelerator passed over me several times. At least that's the way it was supposed to be.

Unfortunately, I suffered a big bout of nausea just after the second pass; and it took awhile to get things cleaned up and for me to rest before the treatment could be resumed. The scene was repeated a few hours later, and by 9:30 it was decided that I would be kept in the hospital overnight for observation due to the nausea. I was given the option to stop the treatment and return another time, but who wanted to repeat this again??? I told the staff I just wanted to get this over with, and Ken was sent home with food from the nurses.

The treatment was finally over at 10:45 p.m., punctuated with one more bout of nausea - as if there was anything left to lose. My head was finally freed from the confinements of the day, and I was placed in a real hospital room by about 11:30. Because of the parade of medical personnel coming and going while taking various histories, I didn't get to sleep until after 3 a.m. I woke up at 6 a.m. feeling fairly alert, all things considered. I was eventually given a full liquid breakfast because of the nausea, but what little I had stayed down with no problem. A doctor came later that morning to inform me that if I could keep a regular lunch down, I would be able to go home in the afternoon.

Alas, lunch didn't show up until 12:15 p.m. - another liquid one. It was yet another hour before solid food finally arrived. At least it stayed down with no problem! Ken arrived shortly before noon with my laptop, so I did spend about an hour online while waiting - and waiting - for someone to complete my discharge papers. The papers finally arrived just after 4 (while Ken was at the Radiation Oncology department getting their orders for me), and we finally left just before 4:30 p.m. We finally got home at 6 p.m.

The one difference between this experience and the last one, aside from what you've already read, is that I wasn't given any medication before the procedure - I had begun taking brain surgery medication 5 days before the last one. This time, I was only sent home with a perscription for one of the pills (decadron), to be tapered down in about a week or so. Even better, Fox Chase had my daily medications ready for me for Friday morning; even though we had brought a supply with us (along with toiletries, a nightgown, and underwear "just in case").

In general, aside from being tired from not getting enough sleep since Wednesday, I am doing better this time than last time. Then again, I had no plans to be out of the house this weekend - and given the very humid weather here, it's just as well I stay indoors. However, I do have some local errands to run tomorrow, including getting my weekly shot of Procrit, so we'll see how that goes. But I feel more up to it this time than last year.

So, that's the way it went!

Another November Update

November 24, 2003 - 8:30pm

Those of you who have followed this saga of mine all these years are aware that many of the more unpleasant times have occurred in the month of November. Well, here we go again...

This segment, though, began somewhat differently for me. I started experiencing some occasional bouts of nausea in the mornings starting in about late September or early October. My weight began dropping, to numbers on the scale I haven't seen in years. I started popping more Tylenol than usual, often a hint of something amiss.

I was due for a followup MRI after July's stereotactic radiosurgery at the end of October, and the scan took place on Monday, November 10. Dr. Feigenberg from Fox Chase called me from the Charlotte Airport the next morning with the bad news: a 3.5 cm tumor in the back of the brain, in the area that had been operated on more than once before. The world basically stopped then and there for us.

We saw Dr. Sen in New York the following Friday, the 14, and he said he didn't want to operate on that area again if he could at all help it. So, we had to wait until our scheduled appointment on Thursday, November 20 at Fox Chase. In the meantime, I did have the scheduled lung CT, which at least showed stability. One piece of good news.

But that Thursday was more than a little difficult, to say the least. I kept feeling "things" - every little bump just seemed to mean something. It's difficult for me to keep my reading glasses on for too long at a time in order to focus on writing, typing, etc.

Bottom line for now: We're about to begin radiation therapy, about 10 to 15 treatments in hopes that this will help shrink things down so I can finally get myself back to some semblance of normalcy. The doctors appear optimistic that this will help, and we just have to keep on having faith that this will be true.

I underwent an MRI simulation at Fox Chase that Thursday afternoon, then returned for an accompanying CT scan with a mask they've created for me to direct the radiation beams. The doctors will then use the results of the two films to determine the actual course of treatment.

If worse comes to worse, we go back to surgery, where healing will once again be difficult.

Needless to say, this has probably been the most difficult time I've ever had with this stuff without being in the hospital. To further complicate matters, neither of us are still working full-time. That means I've been witout a job for a year and a half now; and the creditors are far from happy. (Although there has been an occasional interview, no offers have resulted.) What little money we have is draining more and more quickly. It's sometimes hard not to feel that things are just falling apart all over.

But for now, tomorrow, we begin the work of radiation. Except for Thanksgiving, I anticipate treatment every weekday. An hour and a half drive to Philadelphia for a procedure scheduled to run about 45 minutes start to finish. Admittedly. this has been a pretty antsy time here in limbo, waiting to finally get started on getting this over with. But at least tomorrow we'll begin!

For those interested in my Hebrew name, it's Chaya Rachel ba Tzvia Bleme. Your support and prayers are ever so appreciated by us - especially now.