My name is Jack Nicastro and I have been Judy's significant other for the past year. It is with a great deal of sadness that I inform you of her passing on August 30th, 2003. She She died as she lived - peacefully and surrounded by those who love her. Memorial services were held on Sunday, September 7th. It was Judy's request that contributions be sent to organizations that engage in the preservation and conservation of nature.

Condolences can be sent to her children, Erin and Steve Weinstein at 7024 Kenton, Lincolnwood, IL 60712.

It would be befitting that this be the closing chapter in her journal which she faithfully maintained until the end.

The Great Escape

There's no place like home...There's no place like home...

And here I am back home again. Whew. Now I have to concentrate on staying out of the hospital. I haven't had a good track record these past two weeks.

I'm still on oxygen, but I passed the test for the mini tanks that
come in a shoulder holder today. Unfortunately this is the start of
the holiday weekend, so I won't get to switch my stock of big tanks
for little ones til next week.

I go back on Monday to get my counts checked and if they're okay I'll start on the VP-16 pills again. Until then I'm taking neupogen shots for the weekend to build up some white cells.

The fluid/swelling in my chest, abdomen and now upper thighs is still a problem, and continues to come up with new weird variations. The only thing that will significantly change that is if the chemo works to shrink the nodes that are blocking drainage.

But for now, I'm just glad to be home eating real food again and not wearing those stupid masks anymore. The hospital masks look like Donald Duck's beak and they are even yellow. There ought to be a law... I had to keep swatting people who would walk behind me making quacking noises--and those were my friends!

Naptime for me. Just wanted to let you know what's happening here.

From the hospital on Wed, July 2

It took me 2 1/2 days of fighting the bureaucracy that controls the
new digital (non-compatible) phone system at the hospital, and
getting on my soapbox with anyone official looking who entered my
room, but I finally got hooked up just fine.

The funny thing is that it was the chaplain who made it happen. I
gave her a good speil about how this affects my morale and that of
cancer patients in general to be cut off from all support systems,
except germy ones. She was ready to fight the good fight for me
when she left my room. Lo and behold by last night there was a
phone call from patient relations saying the tech guy would be here
first thing in the morning to hook up the adapter. (I had been told
by several different departments that an adapter didn't exist...)
And here I am!!! I feel like I vanquished a foe and this is my
reward.

I didn't get a chance to tell many people about going into the hospital Sunday night with a fever of 103.3. I am feeling much better now and they are switching me to oral antibiotics this morning and if I stay fever free for 24 hours, I'll go home tomorrow (Thurs).

I'll still need oxygen some of the time, but I'm supposed to get a
lightwieght pack instead of the heavy tank, and the doc wants me off oxygen for several hours a days while I'm reading or sedentary, to try to avoid nose bleeds.

I'm getting daily neupogen to bring up my neutriphils, so the VP-16
is stopped until Monday. Hopefully then I'll get back on it because
the respiratory doc says that's what's going to solve the breathing
prolem, nnot any "bandaid" measures he takes.

I would have loved one of his bandaid measures last night when I
woke up feeling like I couldn't breathe. I had such a panic attack
with that, ehich of course made it worse. Turns out they just gave
me too much fluid yesterday, along with 2 units of blood. My poor
body was all filled up with not much space left for lung expansion.
My oxygen saturation level stayed good though.

Now that I have me internet connection, I am promising to stop
playing tricks on the new little residents (July 1 was the start for
the new batch.) It's hard though. They look so you and earnest...
I've even tried to stop torturing the dieticians, although they are
such an inviting target...

I think they need to send me home quick before my subversive
influence spreads!

There and Back Again

I feel like I've been on a journey these last 4 days. Some of you know about
this and some of you don't. I'm sorry I couldn't let everyone know, but my
phoning abilities were limited, and I was cut off from the internet (even
worse!).

The saga began last Thursday night when I was having trouble breathing. I
couldn't lie down or sit all the way up and breathe well enough. Lounge chair
position was the best I could manage. When I went in to get my blood counts
done on Friday morning, they immediately put me into the hospital because my
oxygen saturation level was so low.

So there I was in a tiny, but two person, room, only able to breathe shallowly
and not able to eat much because I had no space, due to the buildup of fluid in
my abdomen and chest. The pulmonologist came to visit me and drained 1 liter
of fluid from around my right lung. What a relief! Suddenly I could breathe
deeper and eat more.

The pulmonologist said he didn't think I'd had pneumonia, just that the fluid
buildup around my lungs had compressed my lungs so much, especially the right
one, that they looked thickened, like you can get with pneumonia. He said the
draining is only a temporary measure. The fluid will come back. The real
solution for the problem was to get on chemo ASAP and reduce the size of the
nodes so the fluid can drain instead of building up.

They kept me at the hospital til yesterday (Mon) afternoon. I was able to get
the new chemo pills, after lots of bureaucratic red tape and loophole finding
(thanks to David Lipschutz's persistence) and I started the new chemo regimen
today. I'm taking VP-16 daily for 14 days. The first 5 days, I'm also taking
prednisone. I'm told hair loss happens around 3 weeks from now. I'm thinking
about getting a short, punk haircut in the meantime so that there isn't as much
to fall out.

I'm due to go in for counts again on Thursday. In the meantime, I am tethered
to an oxygen-making machine that's parked in Erin's room with a 50 foot tube.
That allows me to go anywhere in my apartment without having to move anything.
I just have to be careful not to trip myself up on the tubing. I also have
small tanks on wheels for going outside. They last for 7 hours, so I can do
quite a bit of boogying in that amount of time. I'm going to test that out by
taking David out for a birthday lunch tomorrow. Well, he'll drive. I'm
grounded from driving because of the meds I'm on.

So that's the story. I am glad to be home, oxygen, hospital bed and all. It
sure beats the tiny cubical without a window I inhabited at the hospital. And
I have my computer here, so I'm back in business.

New Phase

I'm on the brink of going into a new phase here. I'm nervous about it, but also anxious for it to start because of the symptoms I'm having right now. I'm on a low dose Duragesic patch, so the pain is controlled, but I'm getting fevers (102.5 last night) and sweats (not surprising with the fevers, but drenching and dramatic, nonetheless. I have a couple of days left on Cipro and will probably be going back on Zithromax today for another 5 days. (antibiotics) I've also got pleural effusions (fluid around lungs) although the pneumonia seems to be clearing up.

I called the doc about the fever last night. Since my doc was on call, I got to stay home and ride it out because he's seen me do this before, and he just had my blood counts and and exam done yesterday. 2 Tylenol and by 4 am (past the duration of the Tylenol dose) my temp was 97.6. Unfortunately, it's creeping back up this morning. 100.4 at 9:30am.

That can be a problem on the weekends. If one of the other docs is on call, I'm likely to be admitted to the hospital with a fever, when I wouldn't be if my own doc was on call. Thank God last night was a weeknight. The docs all take their own calls M-Th.

The new phase is starting out looking like this:
VP-16 pills, 50 mg daily for 14-21 days (likely 14 for me the way my counts drop) with prednisone the first 5 days only
1-2 weeks off (again 2 weeks is more likely for me)
Daily Neupogen shots when needed for WBC (although if it does turn out to be 14 days off on average, I can take Neulasta)
Platelet transfusions when needed
Weekly Procrit shots for HgB, and blood transfusions when needed

The good part is that it is fewer IVs this way. Maybe the bruises on my arms will have a chance to fade. The bad part is if I can't take Neulasta, I have to go in everyday for my Neupogen shot. Ironic, isn't it? I take pills, so I won't have to go in for the chemo, but I need shots so I have to go in for the shots, because Medicare won't pay for them at home.

Of course, all my treatment plans are written in pencil with a BIG eraser handy. Usually the treatment plan changes right after I get a really expensive prescription filled, which I'll no longer be able to use. :-)

In preparation for the new treatment, which for the first time in my 11 year saga will make me lose my hair, David took me hat shopping. I got a denim baseball cap I like and a couple of big bandannas (navy and purple so far). I'll have to have Steve show me how to tie them right. He's an expert.

Most of the other hats were too gaggy. It was somewhat traumatic being in an Frummy (Jewish Orthodox) hat store (not that many women wear hats anymore except the extremely religious and chemo patients!) I'm still on a quest for another hat or two. The requirements are that they have to be preferably cotton, soft and not scratchy, since I won't have any hair protecting my head. And not too cutesy looking. Suggestions are welcome.

One of the people on the lymphoma email list already sent me a website for welder's hats. They meet the criteria for cotton and soft, but some of the are pretty wild. There must be a lot of female welders. I can't imagine guys wearing the flowered or polka dot ones... Here's the url if you want to check out the welder's hats:
http://www.kromercap.com/catalog.htm

Everyone I know who got a wig, hated it. They wore it once or twice and it was way too hot and uncomfortable, especially in the summer, so they put it in their closet and never wore it again. I don't think I'm much of a wig type anyway. You all will just have to get used to seeing me in goofy hats and doo -rags.

Very Tough Time

Having to postpone chemo because of the pneumonia (which I hardly even feel sick from) has been a tough call. I've had pain over the past couple of weeks, but it moved to a whole new level yesterday, and caught me by surprise actually at the Cancer Care Center while I was there for a platelet transfusion. (Platelet count was 5...)

I'm now on a Duragesic patch which has the pain meds absorbed through my skin instead of tearing up my stomach. Of course, the Cipro antibiotic for pneumonia has been doing a good job of stomach demolition too. The patch is finally kicking in enough that I'm feeling more like myself and less like a 15th century martyr, and it's letting me get lots of sleep.

The next hurdle is finding enough space in my stomach to eat more normally. That may take awhile til I'm back in treatment and the nodes shrink some. As my doc put it today, I'm a small person, so there's not a whole lot of room in there. I'm getting used to food again after a couple of days off. David brought me a great smoothie full of nutritional goodies like protein as well as the usual ingredients. Even smoothies take up space, though. I had to tell him to make me a half smoothie. But it sure tasted good.

I get my chest x-ray redone tomorrow and then see the doc. Hopefully the pneumonia will be resolving enough that we can start the chemo soon--once we decide what the chemo mix will actually be. Maybe the end of this week or, more likely, next week.

Pneumonia Revisited and New Treatment Considerations

My breathing is better this morning, so I seem to be responding well to the antibiotics. I have to continue on them and then get the chest xray redone next Wed. I'll see the doc either Wed or Thurs and we'll make the final decision about the new treatment. Treatment won't start until the end of next week at the earliest, but probably the following week. I would have been more worried about the delay, but I've been using less pain meds the past couple of days, mostly just in the late afternoons and evenings, so the pain is subsiding some on its own.

The new treatment will for sure be VP-16, but my doc is still investigating using it as a single agent vs mixes. Some mixes with VP-16 are very aggressive, meaning they will be very hard on me, especially starting out with low blood counts. He said I have a decision to make about how aggressive to be. An aggressive approach will probably mean about 6 months of in-and-out-of-the-hospital, poor quality of life time. It's possible that after that I could be in remission, but there's no way to predict that because I don't fit any of the statistics anymore. My low counts, many relapses, and previous overreaction to drugs are not in my favor. My nurse Ann says I have to consider that an aggressive approach may mean that I'll go into the hospital and then at some point, not be able to come home again.

My immediate reaction to the decision is to go with the approach that has worked for me for so long, and give my own body a chance to defend itself and recuperate by using the less aggressive approach. The other alternative seems too much like a desperation move and I'm not desperate, nor I have I ever made good decisions from desperation. Blasting my body with heavy chemo does not seem like a good choice to me. But the investigation and thinking still continues.

In the meantime, I'm on daily Neupogen shots to keep my WBC way up while fighting the pneumonia. We're still watching my platelet count which went up a little from 11 yesterday to 13 today. We may recheck tomorrow and I always have the option of popping into the hospital over the weekend for a transfusion if that seems necessary. My doc doesn't want to transfuse me unless my platelets are under 10 or I'm having bleeding. He's concerned about me becoming "refractory" (immune) to platelet transfusions by getting too many and then I'm in trouble. It's been 10 days since my last transfusion, and I've been holding my own. We're hoping the numbers will go up by Monday instead of down.

Oh yes, it seems that VP-16 is likely to make me lose my hair, so I'm getting mentally prepared for the Sinead O'Connor look. I think I'll start collecting goofy/rude hats. I don't think I'm the stylish wig type. Too bad I have such a lumpy, scarred head. Clumsy childhood accidents and lumpy genes, I guess. I'm not sure I'm into showing off that place where I got 14 stitches from a diving board accident, unless I also wear an eye patch and go around with a parrot on my shoulder. Yo Ho Ho...