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.
Thursday, July 03, 2003
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.
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!
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!
Tuesday, June 24, 2003
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.
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.
Thursday, June 19, 2003
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.
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.
Tuesday, June 17, 2003
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.
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.
Thursday, June 12, 2003
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...
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...
Wednesday, June 11, 2003
Pneumonia
Well, I guess I wasn't getting enough attention by not responding to treatment and having my abdomen blow up like a balloon. I've been on pain meds for a week, awaiting the as-yet-not-totally-decided new treatment which was supposed to start tomorrow. I know it is going to involve Rituxan and VP-16, but the other ingredients to the mix were still under discussion.
That is until my shortness of breath finally even got more than I could take without wondering (I have a high tolerance for discomfort, I guess) and my doc sent me for a chest x-ray. I have pneumonia, so treatment is postponed until next week at least. I am not a happy camper. But I don't really feel all that sick. Just achy. Time for more Darvocet.
Pulse ox was okay, no fever, WBC of 4, so I get to ride this one out at home on 2 antibiotics, at least for the time being. More news tomorrow after I see the doc again.
Well, I guess I wasn't getting enough attention by not responding to treatment and having my abdomen blow up like a balloon. I've been on pain meds for a week, awaiting the as-yet-not-totally-decided new treatment which was supposed to start tomorrow. I know it is going to involve Rituxan and VP-16, but the other ingredients to the mix were still under discussion.
That is until my shortness of breath finally even got more than I could take without wondering (I have a high tolerance for discomfort, I guess) and my doc sent me for a chest x-ray. I have pneumonia, so treatment is postponed until next week at least. I am not a happy camper. But I don't really feel all that sick. Just achy. Time for more Darvocet.
Pulse ox was okay, no fever, WBC of 4, so I get to ride this one out at home on 2 antibiotics, at least for the time being. More news tomorrow after I see the doc again.
Monday, June 09, 2003
Pain Problem
These last few days have not been much fun. I've been having a lot of abdominal pain since last Wednesday. On Friday morning I talked to my doc and he said to stop being stoic, let someone else do the driving and take the pain meds. So I finally did that all weekend and now I'm getting ready to go in to get my counts done.
I think this chemo is not working at all. I'm sure the pain is from the nodes. I have an ultrasound of the kidneys scheduled for tomorrow and then I meet with my doc on Thursday morning to come up with a new game plan. The frustrating thing is that if my counts aren't high enough, that may delay any new treatment. I guess we'll just have to wait and see.
These last few days have not been much fun. I've been having a lot of abdominal pain since last Wednesday. On Friday morning I talked to my doc and he said to stop being stoic, let someone else do the driving and take the pain meds. So I finally did that all weekend and now I'm getting ready to go in to get my counts done.
I think this chemo is not working at all. I'm sure the pain is from the nodes. I have an ultrasound of the kidneys scheduled for tomorrow and then I meet with my doc on Thursday morning to come up with a new game plan. The frustrating thing is that if my counts aren't high enough, that may delay any new treatment. I guess we'll just have to wait and see.
Tuesday, June 03, 2003
Transfusion Profusion
One blood and three platelet transfusions in the last 6 days. This is not good. My counts should be bouncing back. I think (hope) the hemoglobin is, but the platelets are giving me a problem again. It's due to the chemo.
If I were feeling lots of benefit from the chemo, this would be a fair trade-off. However, it feels to me like the nodes in my groin are getting bigger and under my arms too. I can't tell what the nodes in my abdomen are doing, but my abdomen is pretty swollen most of the time.
I think I will call my chemo nurse today and ask about the ultrasound we had talked about doing after my last chemo. That should at least give us a clue what's happening around my left kidney, which had the hydronephrosis problem from nodes crimping off that ureter.
I wonder if I'll be switching to a new chemo regimen. If I do have to switch, I hope the new one has fewer side effects, not more.
One blood and three platelet transfusions in the last 6 days. This is not good. My counts should be bouncing back. I think (hope) the hemoglobin is, but the platelets are giving me a problem again. It's due to the chemo.
If I were feeling lots of benefit from the chemo, this would be a fair trade-off. However, it feels to me like the nodes in my groin are getting bigger and under my arms too. I can't tell what the nodes in my abdomen are doing, but my abdomen is pretty swollen most of the time.
I think I will call my chemo nurse today and ask about the ultrasound we had talked about doing after my last chemo. That should at least give us a clue what's happening around my left kidney, which had the hydronephrosis problem from nodes crimping off that ureter.
I wonder if I'll be switching to a new chemo regimen. If I do have to switch, I hope the new one has fewer side effects, not more.
Tuesday, May 27, 2003
Well, Darn!
Looks like the nice weekend I just had, I will be spending all of tomorrow in the aphoresis center (NOT my favorite place, as it is one big room, no windows and lots of lined-up chairs and blaring tvs).
My platelet count at noon today was down to 6 and my hemoglobin was down to 8.5 and I was exhausted from coming off prednisone. They decided not to wait to see if my HgB would rise again, since I'm approaching the nadir after chemo last week and wasn't able to have a Procrit shot lately.
So tomorrow, starting at 9:30 am, I will be sitting in an uncomfortable (too big) recliner chair, trying not to go nuts with daytime trash tv shows all around me (3 different tvs with potentially 3 different obnoxious programs running at the same time!) and getting 2 units of blood and 1 unit of platelets. Probably about 5-6 hours worth. Yuck. I'm still hoping there will be a cancellation in the chemo wing and they'll let me have my usual nice private bedroom looking out on the garden...
Well, at least being on prednisone last week helped me feel a lot better and this blood problem is directly linked to the low point post-chemo. Time to practice my bouncing back again.
Looks like the nice weekend I just had, I will be spending all of tomorrow in the aphoresis center (NOT my favorite place, as it is one big room, no windows and lots of lined-up chairs and blaring tvs).
My platelet count at noon today was down to 6 and my hemoglobin was down to 8.5 and I was exhausted from coming off prednisone. They decided not to wait to see if my HgB would rise again, since I'm approaching the nadir after chemo last week and wasn't able to have a Procrit shot lately.
So tomorrow, starting at 9:30 am, I will be sitting in an uncomfortable (too big) recliner chair, trying not to go nuts with daytime trash tv shows all around me (3 different tvs with potentially 3 different obnoxious programs running at the same time!) and getting 2 units of blood and 1 unit of platelets. Probably about 5-6 hours worth. Yuck. I'm still hoping there will be a cancellation in the chemo wing and they'll let me have my usual nice private bedroom looking out on the garden...
Well, at least being on prednisone last week helped me feel a lot better and this blood problem is directly linked to the low point post-chemo. Time to practice my bouncing back again.
Tuesday, May 20, 2003
Happy Birthday to Me!
Today is my 51st birthday, the second birthday I wasn't sure I'd see, but here I am! The docs gave me a day off from the Cancer Care Center, because my WBC shot up enough I didn't need Neupogen today, and have scheduled my treatment for tomorrow so I can enjoy my birthday. It's going well so far!
I'll be heading out soon for a day of pampering myself. I'm even going to buy myself a new alarm clock/radio, maybe even with a CD player in it! What a luxury! I'm having tea and scones at the
Botanic Garden followed by a nice stroll through the flowers, weather permitting or maybe even if it rains! I have a rain coat. I have my spirituality and healing support group at 1:00. Some nice meditation and relaxation there. Then tonight my boyfriend Jack will take me out to the restaurant of my choice. Sounds like a lovely day to me.
Thank you all for your support over the past couple of years. This has been a tough go, but here I am. Who woulda thought?!? Your support helped make it so.
Today is my 51st birthday, the second birthday I wasn't sure I'd see, but here I am! The docs gave me a day off from the Cancer Care Center, because my WBC shot up enough I didn't need Neupogen today, and have scheduled my treatment for tomorrow so I can enjoy my birthday. It's going well so far!
I'll be heading out soon for a day of pampering myself. I'm even going to buy myself a new alarm clock/radio, maybe even with a CD player in it! What a luxury! I'm having tea and scones at the
Botanic Garden followed by a nice stroll through the flowers, weather permitting or maybe even if it rains! I have a rain coat. I have my spirituality and healing support group at 1:00. Some nice meditation and relaxation there. Then tonight my boyfriend Jack will take me out to the restaurant of my choice. Sounds like a lovely day to me.
Thank you all for your support over the past couple of years. This has been a tough go, but here I am. Who woulda thought?!? Your support helped make it so.
Saturday, May 10, 2003
Coming out of Hiding
Okay, I guess I've hidden out long enough. I've been having a lot of abdominal pain and have symbolically crawled into a cave and pulled in a rock after me--at least emotionally. I've been avoiding most social interaction--except with Jack, of course. But I should at least bring you (whoever reads this besides me) up-to-date about my status.
I was supposed to get treatment last Monday, if my platelet count was up to 50, but my prediction about the likelihood of that was correct. Platelets were only 21 on Monday. I was sent home til Thursday when I got my counts rerun--again with the stipulation that I could get treatment if my platelets were up. They were slightly down instead, at 18. My HgB, which had been up to 9 on Monday, had also dropped again to 8.2.
I had also been experiencing increasing pain and swelling in my abdomen. After having Reiki energy work with Ruth and another sound and vibrational healing session at the Cancer Wellness Center, I was feeling somewhat better on Friday morning. If I hadn't been, I would have been hurried in for an obstructive bowel series, which didn't sound like much fun to me. I also had a lymphatic massage from Darek at the Lymphatic Therapy Center on Friday. That seemed to help a lot too.
Some of the help was also due to the fact that I hadn't eaten much solid food from Wed through Friday morning. Since I was feeling so much better, I started eating more, and now feel swollen and achy again. Damn. Well, Lestingi is back on Monday and I can always make my favorite doc-on-call's weekend more exciting if need be. I seem to eat a lot more when I'm at my own apartment than when I'm at Jack's. Not a good trend to follow right now, it seems.
I'm scheduled to go in on Monday to get my blood counts done again, and determine if I'm going to need a platelet or blood transfusion. On Tuesday I have an 8 am appt with Dr L and will likely be getting treatment after that. He wanted to avoid giving me treatment with low blood counts when he was going to be out of town for a week, but now that he's back, he'll probably go ahead and then keep a closer watch on me.
On the plus side, I already have 8 of my 15 students' final grades calculated, with their stuff all graded. Grades are due by noon on Wed, but I hope to have them ready to turn in by Monday or Tuesday morning at the latest. Seems likely that I'll be in treatment Tuesday, one way or another, so I'd like to have that accomplished beforehand.
I dropped Jack off at the airport this morning and he's on his way to California and a trip with his brother to San Diego. I hope they have lots of fun. I should have some fun too, since I'll be back in the predni-Zone maybe on Tuesday... Wish me luck!
Okay, I guess I've hidden out long enough. I've been having a lot of abdominal pain and have symbolically crawled into a cave and pulled in a rock after me--at least emotionally. I've been avoiding most social interaction--except with Jack, of course. But I should at least bring you (whoever reads this besides me) up-to-date about my status.
I was supposed to get treatment last Monday, if my platelet count was up to 50, but my prediction about the likelihood of that was correct. Platelets were only 21 on Monday. I was sent home til Thursday when I got my counts rerun--again with the stipulation that I could get treatment if my platelets were up. They were slightly down instead, at 18. My HgB, which had been up to 9 on Monday, had also dropped again to 8.2.
I had also been experiencing increasing pain and swelling in my abdomen. After having Reiki energy work with Ruth and another sound and vibrational healing session at the Cancer Wellness Center, I was feeling somewhat better on Friday morning. If I hadn't been, I would have been hurried in for an obstructive bowel series, which didn't sound like much fun to me. I also had a lymphatic massage from Darek at the Lymphatic Therapy Center on Friday. That seemed to help a lot too.
Some of the help was also due to the fact that I hadn't eaten much solid food from Wed through Friday morning. Since I was feeling so much better, I started eating more, and now feel swollen and achy again. Damn. Well, Lestingi is back on Monday and I can always make my favorite doc-on-call's weekend more exciting if need be. I seem to eat a lot more when I'm at my own apartment than when I'm at Jack's. Not a good trend to follow right now, it seems.
I'm scheduled to go in on Monday to get my blood counts done again, and determine if I'm going to need a platelet or blood transfusion. On Tuesday I have an 8 am appt with Dr L and will likely be getting treatment after that. He wanted to avoid giving me treatment with low blood counts when he was going to be out of town for a week, but now that he's back, he'll probably go ahead and then keep a closer watch on me.
On the plus side, I already have 8 of my 15 students' final grades calculated, with their stuff all graded. Grades are due by noon on Wed, but I hope to have them ready to turn in by Monday or Tuesday morning at the latest. Seems likely that I'll be in treatment Tuesday, one way or another, so I'd like to have that accomplished beforehand.
I dropped Jack off at the airport this morning and he's on his way to California and a trip with his brother to San Diego. I hope they have lots of fun. I should have some fun too, since I'll be back in the predni-Zone maybe on Tuesday... Wish me luck!
Friday, May 02, 2003
11 is better than 1, but not by that much!
My platelet count today was 11. That is an improvement over last Friday's count of 1, but not good enough to go through the weekend without a platelet transfusion, as it should be 150-450. This is getting old fast. Also, my doc is on vacation next week, when I'm supposedly due for my next round of the whole R+CVP chemo. That will only happen if my platelet count is 50 or above. How likely is that???
I think the big chemo will be delayed for a week to allow my counts more time to recover. My HgB is 8.6, which means that I would probably also need a blood transfusion sometime if I got the full chemo at that level. It would drop below the acceptable limit of 8.0 almost for sure.
My WBC is 3.6, which means the Neulasta shot has been holding out pretty well. The trick is to get the next treatment before my WBC drops too far because of the Neulasta wearing off. I can't get Neualsta again until 24 hours after I get the next big treatment. It's a balancing act--waiting long enough for the platelets and HgB to recover, but not too long or the WBC will drop too low with the Neulasta wearing off.
Just think of me as a tightrope walker... and I've ALWAYS been so graceful. :-)
My platelet count today was 11. That is an improvement over last Friday's count of 1, but not good enough to go through the weekend without a platelet transfusion, as it should be 150-450. This is getting old fast. Also, my doc is on vacation next week, when I'm supposedly due for my next round of the whole R+CVP chemo. That will only happen if my platelet count is 50 or above. How likely is that???
I think the big chemo will be delayed for a week to allow my counts more time to recover. My HgB is 8.6, which means that I would probably also need a blood transfusion sometime if I got the full chemo at that level. It would drop below the acceptable limit of 8.0 almost for sure.
My WBC is 3.6, which means the Neulasta shot has been holding out pretty well. The trick is to get the next treatment before my WBC drops too far because of the Neulasta wearing off. I can't get Neualsta again until 24 hours after I get the next big treatment. It's a balancing act--waiting long enough for the platelets and HgB to recover, but not too long or the WBC will drop too low with the Neulasta wearing off.
Just think of me as a tightrope walker... and I've ALWAYS been so graceful. :-)
Monday, April 28, 2003
Since Our Last Episode...
I got a good boost from my second platelet transfusion on Friday, after the one last Monday not doing much good. After the transfusion Friday my platelet count went up to 82, so I got the okay to do whatever I wanted on the weekend. Jack and I went hiking twice, along with other fun activities that had been avoided while my platelets were low enough I could get in serious bleeding trouble by "having fun."
Now I'm back at my apartment, trying to remember all the things I need to get accomplished and instead remembering how much I like to lie on my bed and read a good book...
I'm a little nervous about going in to the Cancer Care Center tomorrow to get my counts done again. I don't want them to be low enough that I need another transfusion or that I need to be constantly vigilant about safety. I don't like being back in this place of living intensely in between waiting periods of blood count checks and transfusions and wondering whether my counts will be high enough to get treatment again before the lymphoma gets out of control.
Tune in again tomorrow (or whenever I get around to posting it) for our next episode...
I got a good boost from my second platelet transfusion on Friday, after the one last Monday not doing much good. After the transfusion Friday my platelet count went up to 82, so I got the okay to do whatever I wanted on the weekend. Jack and I went hiking twice, along with other fun activities that had been avoided while my platelets were low enough I could get in serious bleeding trouble by "having fun."
Now I'm back at my apartment, trying to remember all the things I need to get accomplished and instead remembering how much I like to lie on my bed and read a good book...
I'm a little nervous about going in to the Cancer Care Center tomorrow to get my counts done again. I don't want them to be low enough that I need another transfusion or that I need to be constantly vigilant about safety. I don't like being back in this place of living intensely in between waiting periods of blood count checks and transfusions and wondering whether my counts will be high enough to get treatment again before the lymphoma gets out of control.
Tune in again tomorrow (or whenever I get around to posting it) for our next episode...
Friday, April 25, 2003
Low Platelet Queen Reigns Again
I am sooooooo discouraged right now. As I posted earlier this week, my platelet count on Monday morning was 3, so they immediately gave me a platelet transfusion, the first one in almost 6 months.
We planned for me to follow up late yesterday afternoon (Thurs) getting my counts done again, so that they could see if I might need
platelets before the weekend, or if it would be safe to let me go til next Tuesday when I have my next appt.
My platelet count at 4:30 yesterday afternoon was 1. Of course, it was too late to do a transfusion at the Cancer Care Center, which
closes at 5:00. They told me to rush to the ER at the first sign of bleeding, and they called the blood bank and reserved some platelets
for this morning. However, I was a BIT nervous about going home and waiting for morning by myself. I came over to Jack's and drove him
nuts, because he felt like he had to watch me all night to make sure I wasn't bleeding. A fun time was had by all--not!
On the lymphoma listserve I belong to, one of our members, Teri, died suddenly this week from a sudden brain bleed. She was doing fine, checking her email and suddenly she had this tremendous pressure in her head. They rushed her to the ER, but she died. You can probably guess that Teri's story of the sudden brain bleed had a big effect on me. Not only do I feel bad for her and her family, but it really brought home how dangerous my situation is at times. I have tended to be pretty blase about low platelet counts.
Of course, as you can tell since I'm writing this to you, all was well all night. I have a few small bruises, but nothing dramatic. My gums didn't even bleed when I (gingerly) brushed my teeth. Those little platelets are still mighty, few though they may be. I just hope the transfusion this morning will be more effective than the one I got on Monday! I think I'm going to ask them to do a follow up CBC to see how much of a boost I got from the transfusion. I think that is possible. It will help me relax and enjoy the nice spring weekend.
I am sooooooo discouraged right now. As I posted earlier this week, my platelet count on Monday morning was 3, so they immediately gave me a platelet transfusion, the first one in almost 6 months.
We planned for me to follow up late yesterday afternoon (Thurs) getting my counts done again, so that they could see if I might need
platelets before the weekend, or if it would be safe to let me go til next Tuesday when I have my next appt.
My platelet count at 4:30 yesterday afternoon was 1. Of course, it was too late to do a transfusion at the Cancer Care Center, which
closes at 5:00. They told me to rush to the ER at the first sign of bleeding, and they called the blood bank and reserved some platelets
for this morning. However, I was a BIT nervous about going home and waiting for morning by myself. I came over to Jack's and drove him
nuts, because he felt like he had to watch me all night to make sure I wasn't bleeding. A fun time was had by all--not!
On the lymphoma listserve I belong to, one of our members, Teri, died suddenly this week from a sudden brain bleed. She was doing fine, checking her email and suddenly she had this tremendous pressure in her head. They rushed her to the ER, but she died. You can probably guess that Teri's story of the sudden brain bleed had a big effect on me. Not only do I feel bad for her and her family, but it really brought home how dangerous my situation is at times. I have tended to be pretty blase about low platelet counts.
Of course, as you can tell since I'm writing this to you, all was well all night. I have a few small bruises, but nothing dramatic. My gums didn't even bleed when I (gingerly) brushed my teeth. Those little platelets are still mighty, few though they may be. I just hope the transfusion this morning will be more effective than the one I got on Monday! I think I'm going to ask them to do a follow up CBC to see how much of a boost I got from the transfusion. I think that is possible. It will help me relax and enjoy the nice spring weekend.
Monday, April 21, 2003
I'm on the "Far Side"
I guess I'm playing that game again. How low can I go? My platelet count was 3 today. I had to get my first platelet transfusion in almost 6 months. Last one was 11/5/02. Been there, done that, got the t-shirt.
Also back on Procrit for my hemoglobin, which was down to 9.
I was QUITE the cranky patient today, so of course this is when they're initiating the new privacy law procedures, which are on the far side of ridiculous, because no one with any common sense has had to deal with them yet. I rebelled and refused to wear my "visitor" tag (no name) to a place I'd been coming for 9 YEARS (at times EVERY DAY) in order to get my blood drawn and my chemo. I had a few choice words about where the committee could stick their little non-name tags and marched down the hall in righteous indignation, singing, "We shall overcome..." Okay, so I'm crashing from prednisone too, but that didn't affect my actions one bit.
Like no one would be able to tell that I'm a patient from the bruises on my arms and the stupid orange folder I have to carry around for billing purposes... Oh no, they'll be fooled by my generic visitor name tag and my privacy will be maintained. Oh, and now they have (empty) GREEN folders for the specific purpose of covering up my name on my chart when it's sitting on the counter while I get my IV...
I sat in my little chair, reading the "Far Side" comic book Jack lent me and wondering "Which is the far side???" I especially got a kick out of the woman who was wheeling her IV pole with her to the bathroom WHILE WEARING A VISITOR TAG SO NO ONE WOULD KNOW SHE'S A PATIENT!!!
Okay, I'm done now...
--------------
Later that same day...
Responses to "The Far Side"
This is too good to keep to myself. I sent my (wonderful) doc the same email I sent to the list, except I called it the lunacy of oganizational procedures. Here's his response:
----
From: "Timothy Lestingi, M.D."
To:
Subject: RE: the lunacy of organizational procedures
Date: Mon, 21 Apr 2003 17:48:56 -0500
Believe it or not, I agree with you on the privacy law issue, but this is what happens when the government gets involved with most issues in health care. Too much regulation in area that should be common sense (Oh, I didn't know that I shouldn't use a patient's name when I'm telling humorous cancer patient stories at a cocktail party - as if there are any.) But don't do anything about someone's access to a life saving medication because it's only available in pill form. If you really want to do something, write a letter to your congresswoman, Jan Schakowsky, (who is also the congresswoman for the hospital), and tell her how ridiculous these new laws are. Also tell her how your oncolgist's office estimates it will cost another $5 - 10,000/yr to comply with these laws while congress is busy voting to reduce reimbusement for cancer treatments.
See you soon - and hopefully off steroids.
Tim
-----
And not only that, here's my brother the hospice administrator's response to my email:
From: "Zwicky, David"
To: "'judith.weinstein@attbi.com'"
Subject: RE: I'm on the "Far Side"
Date: Mon, 21 Apr 2003 14:44:20 -0700
Welcome to my world as Privacy Officer for our entire company! We asked the government to write these regulations!
Love, your brother
Dear Brother,
We (in the royal sense of the word, since I'm having delusions of grandeur today...) are not amused. Do you ever feel you have fallen down a rabbit hole on your way to work? Or perhaps passed Rod Serling on the expressway? :-|
Love, your sister
----
Well, I am having some fun now. Much more amusing to read these things than to live them...
I guess I'm playing that game again. How low can I go? My platelet count was 3 today. I had to get my first platelet transfusion in almost 6 months. Last one was 11/5/02. Been there, done that, got the t-shirt.
Also back on Procrit for my hemoglobin, which was down to 9.
I was QUITE the cranky patient today, so of course this is when they're initiating the new privacy law procedures, which are on the far side of ridiculous, because no one with any common sense has had to deal with them yet. I rebelled and refused to wear my "visitor" tag (no name) to a place I'd been coming for 9 YEARS (at times EVERY DAY) in order to get my blood drawn and my chemo. I had a few choice words about where the committee could stick their little non-name tags and marched down the hall in righteous indignation, singing, "We shall overcome..." Okay, so I'm crashing from prednisone too, but that didn't affect my actions one bit.
Like no one would be able to tell that I'm a patient from the bruises on my arms and the stupid orange folder I have to carry around for billing purposes... Oh no, they'll be fooled by my generic visitor name tag and my privacy will be maintained. Oh, and now they have (empty) GREEN folders for the specific purpose of covering up my name on my chart when it's sitting on the counter while I get my IV...
I sat in my little chair, reading the "Far Side" comic book Jack lent me and wondering "Which is the far side???" I especially got a kick out of the woman who was wheeling her IV pole with her to the bathroom WHILE WEARING A VISITOR TAG SO NO ONE WOULD KNOW SHE'S A PATIENT!!!
Okay, I'm done now...
--------------
Later that same day...
Responses to "The Far Side"
This is too good to keep to myself. I sent my (wonderful) doc the same email I sent to the list, except I called it the lunacy of oganizational procedures. Here's his response:
----
From: "Timothy Lestingi, M.D."
To:
Subject: RE: the lunacy of organizational procedures
Date: Mon, 21 Apr 2003 17:48:56 -0500
Believe it or not, I agree with you on the privacy law issue, but this is what happens when the government gets involved with most issues in health care. Too much regulation in area that should be common sense (Oh, I didn't know that I shouldn't use a patient's name when I'm telling humorous cancer patient stories at a cocktail party - as if there are any.) But don't do anything about someone's access to a life saving medication because it's only available in pill form. If you really want to do something, write a letter to your congresswoman, Jan Schakowsky, (who is also the congresswoman for the hospital), and tell her how ridiculous these new laws are. Also tell her how your oncolgist's office estimates it will cost another $5 - 10,000/yr to comply with these laws while congress is busy voting to reduce reimbusement for cancer treatments.
See you soon - and hopefully off steroids.
Tim
-----
And not only that, here's my brother the hospice administrator's response to my email:
From: "Zwicky, David"
To: "'judith.weinstein@attbi.com'"
Subject: RE: I'm on the "Far Side"
Date: Mon, 21 Apr 2003 14:44:20 -0700
Welcome to my world as Privacy Officer for our entire company! We asked the government to write these regulations!
Love, your brother
Dear Brother,
We (in the royal sense of the word, since I'm having delusions of grandeur today...) are not amused. Do you ever feel you have fallen down a rabbit hole on your way to work? Or perhaps passed Rod Serling on the expressway? :-|
Love, your sister
----
Well, I am having some fun now. Much more amusing to read these things than to live them...
Friday, April 18, 2003
Whacked Out in the Predni-Zone
Loud music, lots of snacks, dancing around and trying to remember what I'm doing when I go from room to room to get something... or do something... or what was it???
Tomorrow is the 5th and last day of prednisone for this round. Can't wait til it's over. I feel like if you tied a string to my toe, I would follow you around like a helium balloon...
Tomorrow is also my son Steve's 21st birthday. Happy Birthday, Steve! I'm going to see him next week instead of tomorrow when I'm zoned out. It's a better plan, but I'll miss him tomorrow.
I'm going to Jack's so he can watch over me and make sure I don't do anything too radical. This will be the first time he's seen me in the predni-Zone. Is he ready for this? I've been told I'm quite entertaining but he may find it a bit alarming too... or maybe not. He's got his own wacky side.
Loud music, lots of snacks, dancing around and trying to remember what I'm doing when I go from room to room to get something... or do something... or what was it???
Tomorrow is the 5th and last day of prednisone for this round. Can't wait til it's over. I feel like if you tied a string to my toe, I would follow you around like a helium balloon...
Tomorrow is also my son Steve's 21st birthday. Happy Birthday, Steve! I'm going to see him next week instead of tomorrow when I'm zoned out. It's a better plan, but I'll miss him tomorrow.
I'm going to Jack's so he can watch over me and make sure I don't do anything too radical. This will be the first time he's seen me in the predni-Zone. Is he ready for this? I've been told I'm quite entertaining but he may find it a bit alarming too... or maybe not. He's got his own wacky side.
Wednesday, April 16, 2003
So-So Counts, but Chemo Anyway
My counts weren't that great, but Dr L said we were going ahead anyway.
WBC 2.6 (neutriphils only 0.7)
HgB 11.5 (That's actually an improvement.)
Platelets 31 (slight improvement over the 22 from last week)
The good news was that a lot of the surface lymphoma is gone. Now we have to work on the deeper stuff, in the pelvis especially since that's blocking the kidney. I started chemo yesterday and am back in the predni-Zone through Saturday. Have to skip Passover this year. I'll be going in for my Neulasta shot later this afternoon and then back home to wait out the effects of the prednisone. Yuck.
My counts weren't that great, but Dr L said we were going ahead anyway.
WBC 2.6 (neutriphils only 0.7)
HgB 11.5 (That's actually an improvement.)
Platelets 31 (slight improvement over the 22 from last week)
The good news was that a lot of the surface lymphoma is gone. Now we have to work on the deeper stuff, in the pelvis especially since that's blocking the kidney. I started chemo yesterday and am back in the predni-Zone through Saturday. Have to skip Passover this year. I'll be going in for my Neulasta shot later this afternoon and then back home to wait out the effects of the prednisone. Yuck.
News From Last Friday
I'm in "Oh, sh*t" mode here.
My latest CAT scan results were pretty dismal. Essentially, disease
progressing in chest, abdomen and pelvis. The doc says it's worse
than he thought it would be, and he grounded me from family stress.
HA! Like that is about to happen.
In any case, we are going to try one or two rounds of the full chemo
(Rituxan + CVP) that I was taking last fall. If it works fast
enough we'll stay with that. If not, we may have to go to something
stronger like, VP-16 (etoposide?) with Rituxan, I think. Not
looking forward to that.
This is the first time I've had the problems with pleural effusions
and with hydronephrosis. Those are the most emergent problems for
right now. That's what has to get resolved fast to hopefully avoid
more permanent problems. If it doesn't resolve relatively quickly,
I might have to have a stent put in the ureter (if I'm remembering
terminology correctly). Don't want to have to do that either...
I see the doc and am scheduled for treatment on Tuesday morning,
unless my counts are REALLY bad. If they're just medium bad, we're
going ahead anyway, since this can't wait.
I'm at my boyfriend's so he can take care of me for the next few
days. Thank God for Jack! I am feeling so blessed that he has come
into my life and that I'm not going this alone this time. After 10
years of doing it alone, I don't know if I could do it again on my
own. Jack's been great. He's very worried though.
I feel pretty crummy. Swollen abdomen and pressure on my stomach
and diaphragm are making me a bit uncomfortable. Also getting these
results hasn't exactly lowered my stress level. The doc said he
thinks I'll do all right over the weekend, because he is on call,
and I only have problems when he's gone...
I'm in "Oh, sh*t" mode here.
My latest CAT scan results were pretty dismal. Essentially, disease
progressing in chest, abdomen and pelvis. The doc says it's worse
than he thought it would be, and he grounded me from family stress.
HA! Like that is about to happen.
In any case, we are going to try one or two rounds of the full chemo
(Rituxan + CVP) that I was taking last fall. If it works fast
enough we'll stay with that. If not, we may have to go to something
stronger like, VP-16 (etoposide?) with Rituxan, I think. Not
looking forward to that.
This is the first time I've had the problems with pleural effusions
and with hydronephrosis. Those are the most emergent problems for
right now. That's what has to get resolved fast to hopefully avoid
more permanent problems. If it doesn't resolve relatively quickly,
I might have to have a stent put in the ureter (if I'm remembering
terminology correctly). Don't want to have to do that either...
I see the doc and am scheduled for treatment on Tuesday morning,
unless my counts are REALLY bad. If they're just medium bad, we're
going ahead anyway, since this can't wait.
I'm at my boyfriend's so he can take care of me for the next few
days. Thank God for Jack! I am feeling so blessed that he has come
into my life and that I'm not going this alone this time. After 10
years of doing it alone, I don't know if I could do it again on my
own. Jack's been great. He's very worried though.
I feel pretty crummy. Swollen abdomen and pressure on my stomach
and diaphragm are making me a bit uncomfortable. Also getting these
results hasn't exactly lowered my stress level. The doc said he
thinks I'll do all right over the weekend, because he is on call,
and I only have problems when he's gone...
Friday, April 04, 2003
Wednesday, April 02, 2003
Back from Portland but with Low Counts
I had a great time in Portland, visiting Erin and seeing all of the beautiful places there. It was spring there already and flowers were blooming. The waterfalls were spectacular. And our retreat in the mountains at Breitenbush Hot Springs was great too. But I was glad to get back home last night. Traveling is fun and also exhausting.
Now back to reality. My counts today were not good. My platelet count has dropped to 14. I have to go back on Friday to get it checked again. My HgB was only 9.8, which is also low, but not at the transfusable level yet. My WBC was high at 15, but I also have a fungus infection in my mouth (lovely feeling, that) and so I'm on diflucan for a few days.
Family crises continue to boil and tonight is supposed to be a family meeting (a couple of us out-of-towners by conference call) with my mom and her lawyer. Sounds like fun, huh? I think I need a nap.
I had a great time in Portland, visiting Erin and seeing all of the beautiful places there. It was spring there already and flowers were blooming. The waterfalls were spectacular. And our retreat in the mountains at Breitenbush Hot Springs was great too. But I was glad to get back home last night. Traveling is fun and also exhausting.
Now back to reality. My counts today were not good. My platelet count has dropped to 14. I have to go back on Friday to get it checked again. My HgB was only 9.8, which is also low, but not at the transfusable level yet. My WBC was high at 15, but I also have a fungus infection in my mouth (lovely feeling, that) and so I'm on diflucan for a few days.
Family crises continue to boil and tonight is supposed to be a family meeting (a couple of us out-of-towners by conference call) with my mom and her lawyer. Sounds like fun, huh? I think I need a nap.
Friday, March 14, 2003
Oh Boy
There's not a lot of joy around today. Now that my dad's funeral and the aftermath is over, my mother finally got into the senior health center for the evaluation we've been trying to get on her for months, and the diagnosis came back as Alzheimers. My mother is violently expressing her disagreement with the whole idea, and her disgust with most of us kids. The funny (?) part was that she announced to everyone a couple of times today that "Judy" would take her in and that she needed to come and help me. I needed her. Oh boy...
When I told that to my nurse, Ann, who called this afternoon, she said my doctor forbids it and so does she. I can even have a doctor's note if I need one. Jack is ready to stand guard at my door. My knight-in-shining-armor.
God protect me from my mother, and let's all pray for an early resolution to the "where's mom going" problem. There are several good places that they have visited and only need to pick between. Well, that and actually get my mother there. My brothers and their wives who are on the front lines have my everlasting respect and gratitude. The battle is still raging.
There's not a lot of joy around today. Now that my dad's funeral and the aftermath is over, my mother finally got into the senior health center for the evaluation we've been trying to get on her for months, and the diagnosis came back as Alzheimers. My mother is violently expressing her disagreement with the whole idea, and her disgust with most of us kids. The funny (?) part was that she announced to everyone a couple of times today that "Judy" would take her in and that she needed to come and help me. I needed her. Oh boy...
When I told that to my nurse, Ann, who called this afternoon, she said my doctor forbids it and so does she. I can even have a doctor's note if I need one. Jack is ready to stand guard at my door. My knight-in-shining-armor.
God protect me from my mother, and let's all pray for an early resolution to the "where's mom going" problem. There are several good places that they have visited and only need to pick between. Well, that and actually get my mother there. My brothers and their wives who are on the front lines have my everlasting respect and gratitude. The battle is still raging.
Monday, March 03, 2003
My Dad
Dear friends,
As many of you are aware, my dad has been very ill over the past few months. I got a call at 3:00 this morning that he had just died. I will be going to see my doctor this morning, and getting my treatment. After treatment today and tomorrow, I'll be going to Peoria to be with my family. There is a visitation scheduled there on Wed evening and the funeral will be on Thursday.
I was able to get my much awaited and anticipated vacation to Tucson in before this happened, although it was touch and go up to the day before the plane left whether I'd be on it or not. But Jack and I had a great time there. I had some trouble after he left with swelling and pain in my abdomen and a fever, but managed it and got back here for my treatment today. My blood counts were good, even though I had been AWOL from the Cancer Care Center for 2 1/2 weeks. The nodes causing the edema are the main problem right now. I'm hoping today's treatment will help with that.
I spent a lot of the last few days alone in the Tucson area going to my dad's favorite places and trying to send him the sights and sounds I was experiencing. I wanted to do for him what he couldn't do for himself. I can easily picture him with his floppy hat sitting on the bird-watching benches at Madera Canyon, a pair of binoculars around his neck, bird book in hand. It makes me smile.
Dear friends,
As many of you are aware, my dad has been very ill over the past few months. I got a call at 3:00 this morning that he had just died. I will be going to see my doctor this morning, and getting my treatment. After treatment today and tomorrow, I'll be going to Peoria to be with my family. There is a visitation scheduled there on Wed evening and the funeral will be on Thursday.
I was able to get my much awaited and anticipated vacation to Tucson in before this happened, although it was touch and go up to the day before the plane left whether I'd be on it or not. But Jack and I had a great time there. I had some trouble after he left with swelling and pain in my abdomen and a fever, but managed it and got back here for my treatment today. My blood counts were good, even though I had been AWOL from the Cancer Care Center for 2 1/2 weeks. The nodes causing the edema are the main problem right now. I'm hoping today's treatment will help with that.
I spent a lot of the last few days alone in the Tucson area going to my dad's favorite places and trying to send him the sights and sounds I was experiencing. I wanted to do for him what he couldn't do for himself. I can easily picture him with his floppy hat sitting on the bird-watching benches at Madera Canyon, a pair of binoculars around his neck, bird book in hand. It makes me smile.
Monday, February 10, 2003
It's Been A While
I realize that I haven't written anything for 3 weeks here. I must have gotten a life or something. :-)
I am now on maintenance Rituxan (perhaps with Cytoxin next time). I had my first maintenance dose today. It was also the first time in the past 9 months that I had to have my blood drawn and IV started without the PICC line. I'm not used to the ouch anymore, but it wasn't too bad.
I've had a cough for the past two weeks and have already been through 2 antibiotics. No fever or anything. It's my usual sinus infection-related cough. I got a chest x-ray today just to make sure it hasn't changed into a walking pneumonia or anything. But the doc says maybe the trip to Tucson will knock it out.
Speaking of Tucson, I can't wait to go. We leave on Saturday. I'll be gone for 2 weeks. Heavenly! I can already visualize hiking in the canyons... Wandering through Old Town Artisans... Good tex-mex food... Warm weather... Beautiful desert sunsets... Very romantic. I'm ready! Is it Saturday yet???
I just have to hear the results of my chest x-ray tonight or tomorrow and then go get my counts checked one more time before I leave. Oh, I guess I have to pack too... Where is my mind these days?
I realize that I haven't written anything for 3 weeks here. I must have gotten a life or something. :-)
I am now on maintenance Rituxan (perhaps with Cytoxin next time). I had my first maintenance dose today. It was also the first time in the past 9 months that I had to have my blood drawn and IV started without the PICC line. I'm not used to the ouch anymore, but it wasn't too bad.
I've had a cough for the past two weeks and have already been through 2 antibiotics. No fever or anything. It's my usual sinus infection-related cough. I got a chest x-ray today just to make sure it hasn't changed into a walking pneumonia or anything. But the doc says maybe the trip to Tucson will knock it out.
Speaking of Tucson, I can't wait to go. We leave on Saturday. I'll be gone for 2 weeks. Heavenly! I can already visualize hiking in the canyons... Wandering through Old Town Artisans... Good tex-mex food... Warm weather... Beautiful desert sunsets... Very romantic. I'm ready! Is it Saturday yet???
I just have to hear the results of my chest x-ray tonight or tomorrow and then go get my counts checked one more time before I leave. Oh, I guess I have to pack too... Where is my mind these days?
Monday, January 20, 2003
Unexpectedly Great Day
Based on the pain I've been having in that node under my arm and the spread of the pain to my arm, chest and shoulder, I was not expecting any good news when I saw the doc and was scheduled for chemo today. However, last night I really got to wondering if the PICC line that I've had in my left arm all these months (tube threads up into shoulder and down into a main artery) hasn't been exacerbating the nodes in that area. Last night I was so uncomfortable, that by midnight, when neither tylenol or darvocet had done a thing for the pain, I was tempted to rip the thing out of my arm. I didn't give in to that urge, but talked to the doc about it today.
So here's the good news. He agreed with me that it would be good to take out the PICC line (after my chemo) and give that area a rest. They usually don't leave a PICC line in that long, but mine had been working so unusually well that we didn't want to mess with success back when my counts were so low. Now that's not a problem.
The second question I had for him was, given the bad time I had with the last round of chemo/prednisone, could we change to a lower dose of prednisone? Not only did he agree to dropping from 80 mg to 60 this time, but he proposed a "maintenance" plan starting after this round that gets rid of the prednisone altogether! I was sooooo excited to hear that. And he's ready to drop the vincristine which gives me the peripheral neuropathy (numb/tingly fingers and toes) too. My maintenance will be only cytoxin and rituxan once every 4 weeks (instead of every 3 weeks) and since my blood counts have been so stellar, I only have to get my counts done every 3 weeks instead of weekly.
Wow. Now I am PICC-less. I can wash my arm!!! I don't have to take a shower with a plastic bag on!!! I feel like I'm reclaiming my body in many ways. There's no way you can feel healthy (sexy???) with a tube hanging out of your arm. Or at least I couldn't seem to get around it.
Now I'm ready to schedule a vacation to Tucson (and not go alone). And until then and after that, maybe I can have a somewhat normal (or however close to that I've ever been) life for a change. I'm happy. I'm having fun, impending prednisone effects notwithstanding.
Today's counts:
WBC 4.3
HgB 12.3
Platelets 292 (another new record)
Turn on the music, roll up the rugs, blast the stereo, put on my dancing shoes (well, socks really) I'm ready to par-tay!
Based on the pain I've been having in that node under my arm and the spread of the pain to my arm, chest and shoulder, I was not expecting any good news when I saw the doc and was scheduled for chemo today. However, last night I really got to wondering if the PICC line that I've had in my left arm all these months (tube threads up into shoulder and down into a main artery) hasn't been exacerbating the nodes in that area. Last night I was so uncomfortable, that by midnight, when neither tylenol or darvocet had done a thing for the pain, I was tempted to rip the thing out of my arm. I didn't give in to that urge, but talked to the doc about it today.
So here's the good news. He agreed with me that it would be good to take out the PICC line (after my chemo) and give that area a rest. They usually don't leave a PICC line in that long, but mine had been working so unusually well that we didn't want to mess with success back when my counts were so low. Now that's not a problem.
The second question I had for him was, given the bad time I had with the last round of chemo/prednisone, could we change to a lower dose of prednisone? Not only did he agree to dropping from 80 mg to 60 this time, but he proposed a "maintenance" plan starting after this round that gets rid of the prednisone altogether! I was sooooo excited to hear that. And he's ready to drop the vincristine which gives me the peripheral neuropathy (numb/tingly fingers and toes) too. My maintenance will be only cytoxin and rituxan once every 4 weeks (instead of every 3 weeks) and since my blood counts have been so stellar, I only have to get my counts done every 3 weeks instead of weekly.
Wow. Now I am PICC-less. I can wash my arm!!! I don't have to take a shower with a plastic bag on!!! I feel like I'm reclaiming my body in many ways. There's no way you can feel healthy (sexy???) with a tube hanging out of your arm. Or at least I couldn't seem to get around it.
Now I'm ready to schedule a vacation to Tucson (and not go alone). And until then and after that, maybe I can have a somewhat normal (or however close to that I've ever been) life for a change. I'm happy. I'm having fun, impending prednisone effects notwithstanding.
Today's counts:
WBC 4.3
HgB 12.3
Platelets 292 (another new record)
Turn on the music, roll up the rugs, blast the stereo, put on my dancing shoes (well, socks really) I'm ready to par-tay!
Tuesday, January 14, 2003
Good counts are back and gossip too
I went in yesterday to get my counts checked and they were good.
WBC 10.7
HgB 12.4
platelets 202
I have been having an increasing problem over the past couple of days, though. The pain and swelling under my left arm has returned and now I have some pain in my back/shoulderblade area and chest. Some of those nodes must be congested. I talked to my nurse Ann again about changing the way we're doing prednisone. I'll see Dr L next Monday morning before I'm scheduled to have chemo.
I think I've been making great strides in emotional healing and joy-finding department, because of a certain someone, who shall remain nameless just in case he reads this. Don't want him getting a swelled head or anything. :-)
Oops... Guess it will be open season for various relatives and friends teasing me now. Jeez. Just because I'm going around with a goofy smile on my face half the time... Oh well, I shall take it with good grace and rise above it all, my red face notwithstanding.
I went in yesterday to get my counts checked and they were good.
WBC 10.7
HgB 12.4
platelets 202
I have been having an increasing problem over the past couple of days, though. The pain and swelling under my left arm has returned and now I have some pain in my back/shoulderblade area and chest. Some of those nodes must be congested. I talked to my nurse Ann again about changing the way we're doing prednisone. I'll see Dr L next Monday morning before I'm scheduled to have chemo.
I think I've been making great strides in emotional healing and joy-finding department, because of a certain someone, who shall remain nameless just in case he reads this. Don't want him getting a swelled head or anything. :-)
Oops... Guess it will be open season for various relatives and friends teasing me now. Jeez. Just because I'm going around with a goofy smile on my face half the time... Oh well, I shall take it with good grace and rise above it all, my red face notwithstanding.
Monday, January 06, 2003
Difficult Weekend
The aftereffects of last Monday's treatment and the prednisone really got to me, especially this weekend. I had a lot of trouble with back and abdominal spasms, dizziness, headaches, and general weirdness. I'm finally starting to feel better. My nurse Ann said it might be a stronger Rituxan reaction because of the break I took. I think I'm reacting more strongly to the prednisone too. Yuck. But maybe that means it's working better.
My electrolytes were so off from the prednisone that I drank two bottle of Gatorade last night and this morning and it actually tasted good. That's really weird. Usually I can't drink that stuff at all because it tastes so salty to me. Didn't taste salty t all this time. Just like slightly sweetened water.
My muscles are still aching from all the cramping. I feel like I got beaten up from the inside out. I really hope I get some sleep tonight. I have slept more than a couple of hours a night for the past five or six nights. I think a hot bath and an early bedtime is in my very near future.
Here are today's blood counts:
WBC 14
HgB 13.9
Platelets down to 32 (the only real casualty of the treatment besides my aching body)
The aftereffects of last Monday's treatment and the prednisone really got to me, especially this weekend. I had a lot of trouble with back and abdominal spasms, dizziness, headaches, and general weirdness. I'm finally starting to feel better. My nurse Ann said it might be a stronger Rituxan reaction because of the break I took. I think I'm reacting more strongly to the prednisone too. Yuck. But maybe that means it's working better.
My electrolytes were so off from the prednisone that I drank two bottle of Gatorade last night and this morning and it actually tasted good. That's really weird. Usually I can't drink that stuff at all because it tastes so salty to me. Didn't taste salty t all this time. Just like slightly sweetened water.
My muscles are still aching from all the cramping. I feel like I got beaten up from the inside out. I really hope I get some sleep tonight. I have slept more than a couple of hours a night for the past five or six nights. I think a hot bath and an early bedtime is in my very near future.
Here are today's blood counts:
WBC 14
HgB 13.9
Platelets down to 32 (the only real casualty of the treatment besides my aching body)
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