Yay! I'm also not well. We think I'm exhausted and wasn't quite ready for this much activity. We have been going non-stop for over a week. I had an upset stomach Sunday which is probably expected due to the food & drink of Saturday's Bash. My hangover was so bad that I watched the Final Cup game at home with my new family. ;) Actually, I rather enjoyed watching the game at home while we opened the loot and wouldn't have wanted to be anywhere else!
VIVA ITALIA!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Watching Italy go into PK kicks was nerve wracking as hell. They were 0-3 in world cup games decided by PK's including the '94 Final against Brazil. Watching that loss sucked beyond description. Watching the other games in DC bars is quite exhilirating to say the least. You have Nationals from the opposing teams in the bars along with American fans. The excitement is indescribable.
Anyway............After the game I became nauseas, chilled, feverish, and diarrheaish. Yum. I couldn't sleep well but Monday, the next day, I felt fine. So we meant one of Dani's dearest friends for drinks and socializing. Today, I fell nauseas, light-headed, achy, crappy. We leave for the Adirondacks in @36 hours. So, It's @2:30PM, I feel like ass, I'm going to bed.
I'll try to do a full wedding report on a later date.
Goodnight.
Tuesday, July 11, 2006
Wednesday, July 05, 2006
Will They Understand? [L]
It only comes every four years and they've done it 4 times in my lifetime. The first one doesn't really count; it was 1970 and I was only 3, 4 years before I would even start to play. Then I saw them beat West Germany in 1982 and watched a gut-wrenching, heart-breaking loss to Brazil in 1994.
I have no other sports passion like this. Remember how exciting it was when The US beat the USSR in Olympic Hockey? That fervor is matched in the Round of 16. The frenzy rises exponentially through the Quarter-finals, Semi-finals, and on to the Final. The bars in DC are packed with Nationals from the oppossing teams along with the American fans. I've been in Sports bars for most major US finals. The passion doesn't compare. Part of it may be that since it started in 1930 only 11 countries have made it to the Final Game and of these only 7 Countries have ever won The Cup
Now Italy is back in 2006. Almost like clock-work in my lifetime, every 12 years. They will be playing July 9th at 2PM..............July 9th. Dammit. I was reminded of this date during the round of 16 and was kind of worried. Back in January I had other things to worry about then The Final. Much more pressing.
So the World Cup Final didn't enter into the equation when we decided on July 8th as our day to get married. July 8th, 7PM. This is not a catered event nor is it in a rented Hall. We are doing everything on our friends Farm. I believe rushing out might not be an option the next day. And what about my new In-laws? They have a 6PM flight on July 9th. I've never met them before. They arrive tomorrow morning. Dani has watched Italy with me. She even got caught up in the passion during the German game. I think she understands. She even said it would be all right if I go to the game, without a prompt from me. But will her family understand? I'm still unsure of what I will do.
I think I'm more anxious about July 9th then the 8th. Does it get any easier?
I have no other sports passion like this. Remember how exciting it was when The US beat the USSR in Olympic Hockey? That fervor is matched in the Round of 16. The frenzy rises exponentially through the Quarter-finals, Semi-finals, and on to the Final. The bars in DC are packed with Nationals from the oppossing teams along with the American fans. I've been in Sports bars for most major US finals. The passion doesn't compare. Part of it may be that since it started in 1930 only 11 countries have made it to the Final Game and of these only 7 Countries have ever won The Cup
Now Italy is back in 2006. Almost like clock-work in my lifetime, every 12 years. They will be playing July 9th at 2PM..............July 9th. Dammit. I was reminded of this date during the round of 16 and was kind of worried. Back in January I had other things to worry about then The Final. Much more pressing.
So the World Cup Final didn't enter into the equation when we decided on July 8th as our day to get married. July 8th, 7PM. This is not a catered event nor is it in a rented Hall. We are doing everything on our friends Farm. I believe rushing out might not be an option the next day. And what about my new In-laws? They have a 6PM flight on July 9th. I've never met them before. They arrive tomorrow morning. Dani has watched Italy with me. She even got caught up in the passion during the German game. I think she understands. She even said it would be all right if I go to the game, without a prompt from me. But will her family understand? I'm still unsure of what I will do.
I think I'm more anxious about July 9th then the 8th. Does it get any easier?
Sunday, July 02, 2006
I Have Eyebrows & Color! [C]
Looking Fabulous
How Long has it been? Sorry i haven't posted in a while, been busy. How long since my last chemo? I dunno. I'm getting married next Saturday, dammit! My eyebrows are growing back, still light but getting there. I'm so happy I'll have some for the wedding. My mustache stubble is sooooooo dense/thick now. For clarification, I lost the mustache more so than the rest of my facial hair during chemo. My body hair is growing back slowly. I'm so worried I'm gonna have way more hair than before, and denser to boot. But that is a small price to pay for survival, no? The hair on my head is pretty much back to normal and definitly thicker. Like I needed that! ;)
Last week I looked in the mirror and noticed I had color again. Such a weird feeling. So happy to see it. I usually have some color year round, it's my Sicilian half. But during chemo I was pale white. Dani is of the opinion that I was more Grey than anything. Seeing color in my face just made me feel so healthy, so alive. These little things I notice that make me so happy...............it's just different, you know? It's the little things that you notice after an ordeal. An ordeal I still try to trivialize sometimes............
How Sick Was I?
As I've said before, I didn't "look" unhealthy most of the time. I kept most of my head hair and gained weight during my illness. I went out, partied, and almost always had a smile on my face. Dani did the worrying while I put on the face of defiance, like all I had was a bad cold. Not flu, a bad cold. many people go into "seclusion" while fighting Cancer. I was immunosupressed but dared infections to try. Thank God for her. She still denies her role but she was instrumental in my survival. She's as humble as they come.
Tangent - the "tingling" in my left hand is gone for the most part, accept when I workout. More on that later...
Sooooooooooo, I've tried to get back in shape for 5 weeks now. I didn't think it would be this difficult but I guess that tells me how sick I was. This is more frustrating than anything I've ever encountered. I fooled myself in thinking this was no big deal. Some say it takes the same amount of time to recover as the length of ones fight. That means six months of recovery for me. We'll see about that, dammit!
Recovery Attempt
I decided I would walk/Hike Rock Creek National Park (RCNP) for my recovery effort. It's flat and relatively easy. Nice way to begin, no? i would wear my hiking boots and carry a pack, carefully weighed out, and do it 5 days/week. Wasn't sure of distance but I could keep track of time. I would Start at The P Street Entrance in NorthWest (NW) and head North. That was a 30 minute walk.
I estimated I was doing 2miles/hr through all this.
Week 1 - I walked from P St to Calvert St. That was 30 minutes in RCNP. Plus 30min to get there and 35 minutes to get home. an hour and five minutes. I was carrying about 6lbs. on my back. And it frikken hurt!!!! My feet killed me and my right ankle would swell up like I sprained it. WTF is up with that????
Week 2 - P St. to the National Zoo (Adams Mill Rd entrance). Total time in RCNP=1hr. It was still taking me about 30 minutes there and 30minutes to walk home. So now I was up to 2hours walking eachday. My feet still killed me. I would switch to sandels for my walk home from the Zoo. It helped a little. But still, my feet killed. By the time I got home I could barely walk.
Week 3 - P St. to a little North of Pierce Mill. Total time in RCNP, 1 way= 1.5 hrs. Round trip was @3hours and I was carrying 12lbs. I wasn't doing any better, foot wise. It was frustrating. I wasn't, IMO, pushing myself physically, but my feet and ankles were giving out. This Sucks! Three weeks of recovery and I couldn't push myself physically?????
Targeted for Crime - You think one would be relativly safe in RCNP, eh? But this is the city. One day, the day after grade school was out for summer recess, 3 kids on bikes pass me in the opposite direction about 15 minutes after I start my hike. Five minutes later they come up from behind me and ask me where the Zoo is. I tell them how far North it is and they continue on. I think about it. Young teens. Locals. On bikes. They don't know where the Zoo is? Bullshit. My Spidey senses started to tingle. RCNP foot trail follows the road for the most part. Other parts are isolated. Crime does happen but I wasn't gonna allow paranoia take over. I was wondering if they questioned me as a test to see if I was a local. The only out for me was at Calvert St. The only place for these punks to hit me was just after a foot bridge before Calvert St Entrance/Exit. It was a moderately steep hill where only other people on the trail could see, the road wasn't visible from there but it was a 1 minute "run" from there to get out of the Park. I decided if they weren't there then everything was cool. If they were, I might have to run for it. I pulled my phone out as I crossed the bridge. Coming to the end and starting up the hill I saw the 3 punks. They were "resting".
Two taps of the "talk" key and I was speaking to Dani. I started to tell her, very loudly, were I was and that I would see her in about two minutes. This confused Dani. She was at work. Dani has had to do this before. Call me because a creep was invading her space, either on Metro or while walking in our neighborhood. In all fairness to her, it confused her because I have never had to call her for this type of help. So I continued to talk to her as if she were waiting for me at Calvert St, no matter how much she protested. it didn't matter b/c the punks couldn't hear her. Soon, Dani caught on, just after I passed them. She started to flip out but all was good. I was in visual range of the exit and traffic, and there was a Park policeman within sight. The fuckheads passed me saying "we only have a little ways left for the zoo". For some reson I debated continuing on, knowing there were even more isolated areas ahead. Dani was upset that I would even think about it and I did the smart thing and bailed at Calvert St.
Still, my feet were killing me. The walking wasn't working. I neede something else. Something with low impact. To make a long story short - Dani to the rescue, again. She was able to get me in to her gym free of charge. At least for now. And as long as I show up with her in the Morning.
This may shock those who "used" to know me; I get up around 7AM and head straight for the gym. No coffe in me, no food. Who woulda thunk? NO COFFEE???? I used to not be able to take a shower without coffee!
So now we walk about 20 minutes to her gym, work out, go shopping at Whole Foods, and head home. We work out together on the Elliptical for 40 minutes. It's low impact, working legs, bum, arms. Very nice cardiovascular workout, wears me out and I sweat bullets through it. First week I worked out at Resistence Level 2. Second Week I worked out at Level 4. The last few minutes I go up "2 levels" of resistence. On Friday's I go up 4 levels of resistance. This past Friday I was very pleased to break 4miles in 40 minutes. This week, I'll do level 6. I'm still well above my comfort level for weight but hope to be back down to my pre-cancer weight soon.
The tingling "nerve damage" in my left arm become apparent when I work out. Maybe it will go away. Maybe not. It is, however, no longer a constant prescence. I just want to be my old self again. I don't fit into a majority of my clothes and its gut wrenching. Even though I know it was a 1000 times better to gain weight then to lose weight during my ordeal.......I just want to be myself again. I won't feel like I've totally kicked Cancers Ass until I have my old physique back. Until I can caryy 35-40lbs on my back for 8-12 miles, up 3500ft in a day. Then I will know for sure that I won. I will get there. And until then....
Peace.
How Long has it been? Sorry i haven't posted in a while, been busy. How long since my last chemo? I dunno. I'm getting married next Saturday, dammit! My eyebrows are growing back, still light but getting there. I'm so happy I'll have some for the wedding. My mustache stubble is sooooooo dense/thick now. For clarification, I lost the mustache more so than the rest of my facial hair during chemo. My body hair is growing back slowly. I'm so worried I'm gonna have way more hair than before, and denser to boot. But that is a small price to pay for survival, no? The hair on my head is pretty much back to normal and definitly thicker. Like I needed that! ;)
Last week I looked in the mirror and noticed I had color again. Such a weird feeling. So happy to see it. I usually have some color year round, it's my Sicilian half. But during chemo I was pale white. Dani is of the opinion that I was more Grey than anything. Seeing color in my face just made me feel so healthy, so alive. These little things I notice that make me so happy...............it's just different, you know? It's the little things that you notice after an ordeal. An ordeal I still try to trivialize sometimes............
How Sick Was I?
As I've said before, I didn't "look" unhealthy most of the time. I kept most of my head hair and gained weight during my illness. I went out, partied, and almost always had a smile on my face. Dani did the worrying while I put on the face of defiance, like all I had was a bad cold. Not flu, a bad cold. many people go into "seclusion" while fighting Cancer. I was immunosupressed but dared infections to try. Thank God for her. She still denies her role but she was instrumental in my survival. She's as humble as they come.
Tangent - the "tingling" in my left hand is gone for the most part, accept when I workout. More on that later...
Sooooooooooo, I've tried to get back in shape for 5 weeks now. I didn't think it would be this difficult but I guess that tells me how sick I was. This is more frustrating than anything I've ever encountered. I fooled myself in thinking this was no big deal. Some say it takes the same amount of time to recover as the length of ones fight. That means six months of recovery for me. We'll see about that, dammit!
Recovery Attempt
I decided I would walk/Hike Rock Creek National Park (RCNP) for my recovery effort. It's flat and relatively easy. Nice way to begin, no? i would wear my hiking boots and carry a pack, carefully weighed out, and do it 5 days/week. Wasn't sure of distance but I could keep track of time. I would Start at The P Street Entrance in NorthWest (NW) and head North. That was a 30 minute walk.
I estimated I was doing 2miles/hr through all this.
Week 1 - I walked from P St to Calvert St. That was 30 minutes in RCNP. Plus 30min to get there and 35 minutes to get home. an hour and five minutes. I was carrying about 6lbs. on my back. And it frikken hurt!!!! My feet killed me and my right ankle would swell up like I sprained it. WTF is up with that????
Week 2 - P St. to the National Zoo (Adams Mill Rd entrance). Total time in RCNP=1hr. It was still taking me about 30 minutes there and 30minutes to walk home. So now I was up to 2hours walking eachday. My feet still killed me. I would switch to sandels for my walk home from the Zoo. It helped a little. But still, my feet killed. By the time I got home I could barely walk.
Week 3 - P St. to a little North of Pierce Mill. Total time in RCNP, 1 way= 1.5 hrs. Round trip was @3hours and I was carrying 12lbs. I wasn't doing any better, foot wise. It was frustrating. I wasn't, IMO, pushing myself physically, but my feet and ankles were giving out. This Sucks! Three weeks of recovery and I couldn't push myself physically?????
Targeted for Crime - You think one would be relativly safe in RCNP, eh? But this is the city. One day, the day after grade school was out for summer recess, 3 kids on bikes pass me in the opposite direction about 15 minutes after I start my hike. Five minutes later they come up from behind me and ask me where the Zoo is. I tell them how far North it is and they continue on. I think about it. Young teens. Locals. On bikes. They don't know where the Zoo is? Bullshit. My Spidey senses started to tingle. RCNP foot trail follows the road for the most part. Other parts are isolated. Crime does happen but I wasn't gonna allow paranoia take over. I was wondering if they questioned me as a test to see if I was a local. The only out for me was at Calvert St. The only place for these punks to hit me was just after a foot bridge before Calvert St Entrance/Exit. It was a moderately steep hill where only other people on the trail could see, the road wasn't visible from there but it was a 1 minute "run" from there to get out of the Park. I decided if they weren't there then everything was cool. If they were, I might have to run for it. I pulled my phone out as I crossed the bridge. Coming to the end and starting up the hill I saw the 3 punks. They were "resting".
Two taps of the "talk" key and I was speaking to Dani. I started to tell her, very loudly, were I was and that I would see her in about two minutes. This confused Dani. She was at work. Dani has had to do this before. Call me because a creep was invading her space, either on Metro or while walking in our neighborhood. In all fairness to her, it confused her because I have never had to call her for this type of help. So I continued to talk to her as if she were waiting for me at Calvert St, no matter how much she protested. it didn't matter b/c the punks couldn't hear her. Soon, Dani caught on, just after I passed them. She started to flip out but all was good. I was in visual range of the exit and traffic, and there was a Park policeman within sight. The fuckheads passed me saying "we only have a little ways left for the zoo". For some reson I debated continuing on, knowing there were even more isolated areas ahead. Dani was upset that I would even think about it and I did the smart thing and bailed at Calvert St.
Still, my feet were killing me. The walking wasn't working. I neede something else. Something with low impact. To make a long story short - Dani to the rescue, again. She was able to get me in to her gym free of charge. At least for now. And as long as I show up with her in the Morning.
This may shock those who "used" to know me; I get up around 7AM and head straight for the gym. No coffe in me, no food. Who woulda thunk? NO COFFEE???? I used to not be able to take a shower without coffee!
So now we walk about 20 minutes to her gym, work out, go shopping at Whole Foods, and head home. We work out together on the Elliptical for 40 minutes. It's low impact, working legs, bum, arms. Very nice cardiovascular workout, wears me out and I sweat bullets through it. First week I worked out at Resistence Level 2. Second Week I worked out at Level 4. The last few minutes I go up "2 levels" of resistence. On Friday's I go up 4 levels of resistance. This past Friday I was very pleased to break 4miles in 40 minutes. This week, I'll do level 6. I'm still well above my comfort level for weight but hope to be back down to my pre-cancer weight soon.
The tingling "nerve damage" in my left arm become apparent when I work out. Maybe it will go away. Maybe not. It is, however, no longer a constant prescence. I just want to be my old self again. I don't fit into a majority of my clothes and its gut wrenching. Even though I know it was a 1000 times better to gain weight then to lose weight during my ordeal.......I just want to be myself again. I won't feel like I've totally kicked Cancers Ass until I have my old physique back. Until I can caryy 35-40lbs on my back for 8-12 miles, up 3500ft in a day. Then I will know for sure that I won. I will get there. And until then....
Peace.
Wednesday, May 31, 2006
ChemoBrain/ChemoBody [C]
Chemobrain: "Cognitive dysfunction associated with chemotherapy. It is thought that chemotherapy may cause memory loss, attention loss, and other problems that make it difficult for patients to think clearly. Also known as chemo-brain, chemo-fog, and chemotherapy-related cognitive dysfunction."
This includes multi-tasking, word retrieval, recogniton issues (especially with people), etc. Sometimes I have to pause while speaking due to articulation issues. Sometimes I just can't think of the right word. Sometimes it happens too often.
This "symptom/s" can apparently continue well after treatment has concluded........."Diaphragm! "(explain that later, word retrieval delay). I also seem to still have a problem with irrationality/emotion swings. I saw a reference that connected emotional/rational issues to chemobrain but can't remember if it's a symptom on itself or brought about by frustration due to cognitive difficulties.
And, unfortunately, I can get very frustrated.
The problem with all this is it was easy to recognize during treatment. Not so much now. I think it might be a combination of not expecting it and perhaps the symptoms are worse, an accumulation that I can't/didn't recognize? The symptoms, especially irrationality, have snuck up on me several times, even after I read about its existence. I need to keep diligent, watching for it. But is it harder for me to remember these things? Here's a nice circular argument I could have with myself, eh?
Did I ever tell the "Blanket Story" here? Short version: During chemo days, Dani wanted me to bring the blanket and once I did she didn't want it? I almost exploded but I was able to catch this completely irrational emotion. I went to the living room and actually had a debate/argument inside my head. one side saying I was justified in getting upset, the other side telling me what an irrational idiot I was. I started repeating to myself "It's the chemo". The right side one that night. Lately, it hasn't, though. For some reason I didn't think recovery would be so difficult. And maybe, once again, my outward appearance is playing a roll in that. That might amplify my frustration. It's a double edge sword, though. Not losing my head hair and not losing weight was most likely a tremendous help in my Morale and thus my success in beating Cancer. but it still sucks when I lose my battle with my irrational self.
And most unfortunately, Dani is usually around me when I lose my battles. Sometimes I think I don't deserve her. Of all the things she's had to put up with, an irrational Phil is not needed, to say the least. Sorry.
And sometimes my anger might be justified but I am not expressing it well, expressing anger at a perceived slight. i can only recall the basics but I was angry, and telling Dani why I was angry. She thought I was being irrational. I thought not so I went into detail. As I was explaining to Dani why I was angry the real source of the anger revealed itself. Then Dani understood why I was angry.
Does that make any frikken sense to anyone? Lets plod on...
ChemoBody: "Physiological dysfunction associated with chemotherapy. It is thought that chemotherapy may cause increase in injury, hematomas, and other problems that make it difficult for patients to recover physically. Also known as chemo-body, and chemotherapy-related physiological dysfunction."
OK. I made that definition up.
:D
I kill me! But, actually, there seems to be something going on. And I don't think chemobrain is causing it.
1. As some of you may have heard me whine about before, I'm fat. I need to exercise. My sneakers were 3-4 years old and I was getting shinsplints just from walking in them. So I got new footwear, Trailrunners. Within a few days I had some blisters (typical), and a hematoma under my left big toe (atypical). The toe was sensitive to touch. I couldn't wear anything but sandals for a week. I don't recall injuring it. Dani said I stubbed it earlier. And I recalled that incident after she mentioned it but it didn't seem connected. That disconnect may be chemobrain or.....
2. We went to our friend Claytons Family Farm outside of DC for Memorial Day. Beautiful land. We had been playing all day (I'm like a Fresh Air Kid when i get out of the city) and I noticed my right ankle hurt. Then it swelled up considerably. I have no idea when I hurt it, no defining moment. It required ice and the next day the swelling was gone along with some pain. Still dificult to walk on.
I seem to injure easily and I don't know why. Maybe it's the lack of activity?
Diaphragm. Sometimes after i eat my Diaphragm area becomes "bloated" and feels very uncomfortable. I'm talking expanded to the max. Might be an issue with my digestive system still out of whack. Maybe an allergy?
Note - earlier today I was thinking of that symptom and couldn't remember the word "Diaphragm" until I was writing this entry. Word retrieval difficulty.
So, on some days, ie yesterday, I can be in total irrational mode with "chemobody" galor and I'm about as much fun to be around with as an angry badger. Add that it was 93* in DC with a Heat Index of 100* and I can become a rabid badger. And if you've never seen an angry badger then consider yourself lucky.
Most days, though, I feel really good and I don't expect chemobrain to last forever.
Oh. One other thing. My Left Nipple hurts when I press on it. No idea why. But on that bit of TMI I'll say goodbye. LOL!
Peace
This includes multi-tasking, word retrieval, recogniton issues (especially with people), etc. Sometimes I have to pause while speaking due to articulation issues. Sometimes I just can't think of the right word. Sometimes it happens too often.
This "symptom/s" can apparently continue well after treatment has concluded........."Diaphragm! "(explain that later, word retrieval delay). I also seem to still have a problem with irrationality/emotion swings. I saw a reference that connected emotional/rational issues to chemobrain but can't remember if it's a symptom on itself or brought about by frustration due to cognitive difficulties.
And, unfortunately, I can get very frustrated.
The problem with all this is it was easy to recognize during treatment. Not so much now. I think it might be a combination of not expecting it and perhaps the symptoms are worse, an accumulation that I can't/didn't recognize? The symptoms, especially irrationality, have snuck up on me several times, even after I read about its existence. I need to keep diligent, watching for it. But is it harder for me to remember these things? Here's a nice circular argument I could have with myself, eh?
Did I ever tell the "Blanket Story" here? Short version: During chemo days, Dani wanted me to bring the blanket and once I did she didn't want it? I almost exploded but I was able to catch this completely irrational emotion. I went to the living room and actually had a debate/argument inside my head. one side saying I was justified in getting upset, the other side telling me what an irrational idiot I was. I started repeating to myself "It's the chemo". The right side one that night. Lately, it hasn't, though. For some reason I didn't think recovery would be so difficult. And maybe, once again, my outward appearance is playing a roll in that. That might amplify my frustration. It's a double edge sword, though. Not losing my head hair and not losing weight was most likely a tremendous help in my Morale and thus my success in beating Cancer. but it still sucks when I lose my battle with my irrational self.
And most unfortunately, Dani is usually around me when I lose my battles. Sometimes I think I don't deserve her. Of all the things she's had to put up with, an irrational Phil is not needed, to say the least. Sorry.
And sometimes my anger might be justified but I am not expressing it well, expressing anger at a perceived slight. i can only recall the basics but I was angry, and telling Dani why I was angry. She thought I was being irrational. I thought not so I went into detail. As I was explaining to Dani why I was angry the real source of the anger revealed itself. Then Dani understood why I was angry.
Does that make any frikken sense to anyone? Lets plod on...
ChemoBody: "Physiological dysfunction associated with chemotherapy. It is thought that chemotherapy may cause increase in injury, hematomas, and other problems that make it difficult for patients to recover physically. Also known as chemo-body, and chemotherapy-related physiological dysfunction."
OK. I made that definition up.
:D
I kill me! But, actually, there seems to be something going on. And I don't think chemobrain is causing it.
1. As some of you may have heard me whine about before, I'm fat. I need to exercise. My sneakers were 3-4 years old and I was getting shinsplints just from walking in them. So I got new footwear, Trailrunners. Within a few days I had some blisters (typical), and a hematoma under my left big toe (atypical). The toe was sensitive to touch. I couldn't wear anything but sandals for a week. I don't recall injuring it. Dani said I stubbed it earlier. And I recalled that incident after she mentioned it but it didn't seem connected. That disconnect may be chemobrain or.....
2. We went to our friend Claytons Family Farm outside of DC for Memorial Day. Beautiful land. We had been playing all day (I'm like a Fresh Air Kid when i get out of the city) and I noticed my right ankle hurt. Then it swelled up considerably. I have no idea when I hurt it, no defining moment. It required ice and the next day the swelling was gone along with some pain. Still dificult to walk on.
I seem to injure easily and I don't know why. Maybe it's the lack of activity?
Diaphragm. Sometimes after i eat my Diaphragm area becomes "bloated" and feels very uncomfortable. I'm talking expanded to the max. Might be an issue with my digestive system still out of whack. Maybe an allergy?
Note - earlier today I was thinking of that symptom and couldn't remember the word "Diaphragm" until I was writing this entry. Word retrieval difficulty.
So, on some days, ie yesterday, I can be in total irrational mode with "chemobody" galor and I'm about as much fun to be around with as an angry badger. Add that it was 93* in DC with a Heat Index of 100* and I can become a rabid badger. And if you've never seen an angry badger then consider yourself lucky.
Most days, though, I feel really good and I don't expect chemobrain to last forever.
Oh. One other thing. My Left Nipple hurts when I press on it. No idea why. But on that bit of TMI I'll say goodbye. LOL!
Peace
Sunday, May 28, 2006
Dr. Not So Gloomy/Where's The Party? The AntiClimax [C]
5/26/06
Post treatment visit with the Doc to get the "final word".
PFT test results: Lungs are fine. No damage. "Wow". I'm surprised.
PET Scan results:
Impression:
1. No definite evidence for a FDG avid malignant tumor
2. Diffusely increased FDG uptake in the axial and appendicular skeleton consistent with bone marrow hyperplasia secondary to chemotherapy. While such intense activity limits evaluation of the skeleton, given this limitation, there are no discrete foci suspicious for osseous metastatases.
like that second "impression"? Bone marrow cells undergo intense growth after chemotherapy in younger patients (hyperplasia), therefore an area of my skeleton glows from the PET scan - a false positive. No discrete foci for osseous metastases means no skeleton tumors. Capice?
I'm negative for Cancer, dammit! HalleFuckingluiah!
I give my Doctor a heart attack when I tell her my hands and feet feel swollen. She drops to the ground and checks my feet. Swollen feet are a sign of heart condition, secondary to chemotherapy. she says they're fine. Must be the weight gain. :( Sucks but it beats death, no?
I'm cured! I don't believe in remission, that's for pessimists. My Dr., however, doesn't share my philosophy. There may be Lung/Heart issues, along with secondary Cancers. I will have a CT Scan/Onco visit every 3 months for a year. Then every 12 months for 6 years. then My Doctor will be convinced I'm free. I think She just has the Hots for me and can't let go.
AntiClimax
But I'm officially free of Cancer. So why no Party? Dani and I are both react with a blasé attitude. In fact, we don't "react" at all. it sucks to lose someone you love to Cancer. Like any other loss, you mourn. Why aren't we reacting in the opposite way?
I think because it's been such a long struggle. One that was physically and emotionaly draining for both of us. It consumed our lives. Focused us on me kicking Cancers ass. then there was the second PET scan after 8 treatments. We both cried with joy after we heard the results. Then there was my last treatment on 4/28/06. We cried with joy then. Then my last PET scan on 5/4/06. I think we both assumed that if the scan showed Cancer we would have been called immediately for more treatments.
And once I started to feel "nothing" we both felt.................done. We were done with this. So when the Dr. confirmed I was Cancer free we were done and had been done for a while. No need to celebrate. No desire.
Dani described it as your last finals in college. you study for them for months, take them, finish them, and then say "Huh, what next?"
We are done.
It's been a long road, somewhat hellish road. But still filled with some amazing happy times, the best times of my life with many more to come for Dani and I.
Peace.
Post treatment visit with the Doc to get the "final word".
PFT test results: Lungs are fine. No damage. "Wow". I'm surprised.
PET Scan results:
Impression:
1. No definite evidence for a FDG avid malignant tumor
2. Diffusely increased FDG uptake in the axial and appendicular skeleton consistent with bone marrow hyperplasia secondary to chemotherapy. While such intense activity limits evaluation of the skeleton, given this limitation, there are no discrete foci suspicious for osseous metastatases.
like that second "impression"? Bone marrow cells undergo intense growth after chemotherapy in younger patients (hyperplasia), therefore an area of my skeleton glows from the PET scan - a false positive. No discrete foci for osseous metastases means no skeleton tumors. Capice?
I'm negative for Cancer, dammit! HalleFuckingluiah!
I give my Doctor a heart attack when I tell her my hands and feet feel swollen. She drops to the ground and checks my feet. Swollen feet are a sign of heart condition, secondary to chemotherapy. she says they're fine. Must be the weight gain. :( Sucks but it beats death, no?
I'm cured! I don't believe in remission, that's for pessimists. My Dr., however, doesn't share my philosophy. There may be Lung/Heart issues, along with secondary Cancers. I will have a CT Scan/Onco visit every 3 months for a year. Then every 12 months for 6 years. then My Doctor will be convinced I'm free. I think She just has the Hots for me and can't let go.
AntiClimax
But I'm officially free of Cancer. So why no Party? Dani and I are both react with a blasé attitude. In fact, we don't "react" at all. it sucks to lose someone you love to Cancer. Like any other loss, you mourn. Why aren't we reacting in the opposite way?
I think because it's been such a long struggle. One that was physically and emotionaly draining for both of us. It consumed our lives. Focused us on me kicking Cancers ass. then there was the second PET scan after 8 treatments. We both cried with joy after we heard the results. Then there was my last treatment on 4/28/06. We cried with joy then. Then my last PET scan on 5/4/06. I think we both assumed that if the scan showed Cancer we would have been called immediately for more treatments.
And once I started to feel "nothing" we both felt.................done. We were done with this. So when the Dr. confirmed I was Cancer free we were done and had been done for a while. No need to celebrate. No desire.
Dani described it as your last finals in college. you study for them for months, take them, finish them, and then say "Huh, what next?"
We are done.
It's been a long road, somewhat hellish road. But still filled with some amazing happy times, the best times of my life with many more to come for Dani and I.
Peace.
Feeling "Normal". Feeling Weird. Feeling Nothing. Life is Good. [C]
5/13/06
Saturday, 2 weeks plus one day after my last chemo treatment. The longest i've gone without chemo since November. It's a beautiful day. Dani and I go for a walk. We are on Florida Ave, just past 14th St. when it hits me: I feel.....................................nothing. And It feels really, incredibly, nice. I express this to Dani. I feel so good, so not unwell. My eyes well up with tears.
For 6 Months I was not well. Most of the time, or maybe about half the time, I thought I felt well. I think it was that "survival mode" thing; Focus on the pain and it might drive me nuts. Might even kill me. Positive attitude is so much of the battle. it might also be that I felt "well" relative to how I felt 3-7 days immediately after chemo, when I felt like ass in so many ways.
Now was different and it was so obvious. I could breath better, there was no pain anywhere in my body, I wasn't fatigued. If I think about it I do notice some tingling in my left fingers. But that's it. I don't know if I'm describing this well. I feel nothing and that feels wonderful. I look at the sky as we walk and can't help but think how wonderful it is to be alive.
Saturday, 2 weeks plus one day after my last chemo treatment. The longest i've gone without chemo since November. It's a beautiful day. Dani and I go for a walk. We are on Florida Ave, just past 14th St. when it hits me: I feel.....................................nothing. And It feels really, incredibly, nice. I express this to Dani. I feel so good, so not unwell. My eyes well up with tears.
For 6 Months I was not well. Most of the time, or maybe about half the time, I thought I felt well. I think it was that "survival mode" thing; Focus on the pain and it might drive me nuts. Might even kill me. Positive attitude is so much of the battle. it might also be that I felt "well" relative to how I felt 3-7 days immediately after chemo, when I felt like ass in so many ways.
Now was different and it was so obvious. I could breath better, there was no pain anywhere in my body, I wasn't fatigued. If I think about it I do notice some tingling in my left fingers. But that's it. I don't know if I'm describing this well. I feel nothing and that feels wonderful. I look at the sky as we walk and can't help but think how wonderful it is to be alive.
Chronic Pain Sucks. [C]
I got a taste of it with that arm pain. It lasted for about a week. There was nothing I could do, nothing made me feel good. I tried Arthritis pain relievers, Alcohol, but nothing worked. I described it as a "6" on a scale of 1-10 but in retrospect it was more like an 8-9. I think I was downplaying it so I could live with it. Focusing on the pain might have driven me crazy. It was always there. A dull, intense, pain. I didn't sleep much during that period. I feel for anyone who deals with it most of their lives.
BTW - Older people don't need less sleep, they get less sleep because of aches, pains, etc., wake them up. Been there, briefly. If I haven't made it clear, it really sucked.
5/10/06
PET Scan to see if I'm Cancer Free. Of course the douchbag can't hit the first vein. My scan was delayed a little because the person before me moved his head during his scan. I don't understand that. I sleep through mine. Can't have anything but water for at least 6hrs before the scan. getting up and driving to the Hospital on an empty stomach and without any coffee takes all my energy. How could one be awake enough to "move" during the exam? especially since they strap you in pretty good?
5/12/06
Last blood draw. I guess they want to make sure my cell lines are recovering.
5/17/06
Pulmonary Function Test. I'm a little worried about my Lung capacity. It seems different and can be easily affected by Chemo. So my Dr. orders a PFT. This one takes about 10 minutes. My first one took 30-40 minutes. Dani thinks something must be wrong. I think my Lungs must rock...................mostly.
My next Oncology appointment isn't until 5/26/06. We both decide, to ourselves, that we aren't gonna worry about the test results. Not gonna bug them about it. time to get on with our lives, no?
BTW - Older people don't need less sleep, they get less sleep because of aches, pains, etc., wake them up. Been there, briefly. If I haven't made it clear, it really sucked.
5/10/06
PET Scan to see if I'm Cancer Free. Of course the douchbag can't hit the first vein. My scan was delayed a little because the person before me moved his head during his scan. I don't understand that. I sleep through mine. Can't have anything but water for at least 6hrs before the scan. getting up and driving to the Hospital on an empty stomach and without any coffee takes all my energy. How could one be awake enough to "move" during the exam? especially since they strap you in pretty good?
5/12/06
Last blood draw. I guess they want to make sure my cell lines are recovering.
5/17/06
Pulmonary Function Test. I'm a little worried about my Lung capacity. It seems different and can be easily affected by Chemo. So my Dr. orders a PFT. This one takes about 10 minutes. My first one took 30-40 minutes. Dani thinks something must be wrong. I think my Lungs must rock...................mostly.
My next Oncology appointment isn't until 5/26/06. We both decide, to ourselves, that we aren't gonna worry about the test results. Not gonna bug them about it. time to get on with our lives, no?
Saturday, May 06, 2006
Drug Addiction or Pain; WTF Can't I Sleep? [C]
it's 7:30AM EDT. I went to bed at 1AM and woke up at 4AM. Fuck.
The Pain started Wednesday night. I had a PET Scan that Morning and took my last shot of Neupogen around 7PM. The pain is in my left arm, forearm area and upper arm near shoulder (not really localized). It's dull. This is the arm that I'm experiencing some neurological problems from chemo (tingling & numbness in the hand). It's also the arm in which I received my last chemo. Most of my chemo has been in my left arm. I chose the left one for my last dose b/c my right arm felt perfectly fine. I didn't want two arms potentially fucked up. And most of chemo was in my left b/c I'm right handed. It's choosing to potentially sacrifice your "weaker" arm.
If I'm not being clear: the chemo drugs easily damage the injection area because they enter highly concentrated and then diffuse as they travel. This is why the Nurse is always careful with the slow bolus injection, making sure there is good blood return every few mls of injection. If not the needle is against the vein wall and that is "not good". the drug can probably eat through the vein wall. And why there can be irreversible nerve damage
So, you choose, if possible, to have most of your injections in your weaker arm.
Am I babbeling?
So, the pain in my left arm could be from chemo injection or it could be from Neupogen. Or maybe something else? It was so bad Friday night that Dani paged the oncall Oncologist. She usually does b/c I'm an idiot about these things. the Onco suggests I apply heat and elevate the arm. he's thinking Blood Clot. I'm thinking He's an idiot. We try heat. We try a towel heated in the drying. Didn't work. We ended up wrapping a heating pad around my arm with bandage gauze. The heat worked as long as it was on high enough to burn me. And maybe "worked" because I was cutting off my circulation pretty good. In fact, my inner elbow still has some damage from heat/friction. So I apply heat in a very limited way, to say the least. And there's no way I can sleep with the heat.
Oh well.
On the 1-10 pain scale I give it a 6. Other than that my hands might be a little swollen and my right thumb looks to be 2x the size of my left.
FELIZE CINCO DE MAYO!!!!!!!!
So besides my arm I'm feeling good. No Nausea so I decided to forgo Zofran & Lorazepam. I have a few Whiskey's to celebrate America's Toast to Mexico kicking French Butt. Why are we so fixated on the French losing battles?
Anyway, it seemed like I was tired when i went to bed but I guess not. The question is did the pain wake me or the lack of Lorazepam? I took it 7 days straight this time and it is highly addictive. i would like a painkiller for my arm except in that it might do the same thing....................I just lost my left contact. It's been bothering me for a while, guess I'll toss it now (I have a supply of extend-o-wear)..............OK. So I don't want to take a painkiller b/c I hate the thought of becoming dependent like I might have become on Lorazepam. No matter how slight. But I hate not sleeping, especially since I'm in pain. I almost did some shots of Makers Mark and even thought about taking my last Lorazepam, for a second. Then I thought; "Fuck it. There are way worse things I could be experiencing right now." So i guess I suck it up for a while and try not to be too pissy about the pain and lack of sleep. Wish Dani luck!
;)
And now, my left fingers are starting to hurt from typing. I should probably stop and take out my right contact.
FELIZ SEIS DE MAYO!
Peace
The Pain started Wednesday night. I had a PET Scan that Morning and took my last shot of Neupogen around 7PM. The pain is in my left arm, forearm area and upper arm near shoulder (not really localized). It's dull. This is the arm that I'm experiencing some neurological problems from chemo (tingling & numbness in the hand). It's also the arm in which I received my last chemo. Most of my chemo has been in my left arm. I chose the left one for my last dose b/c my right arm felt perfectly fine. I didn't want two arms potentially fucked up. And most of chemo was in my left b/c I'm right handed. It's choosing to potentially sacrifice your "weaker" arm.
If I'm not being clear: the chemo drugs easily damage the injection area because they enter highly concentrated and then diffuse as they travel. This is why the Nurse is always careful with the slow bolus injection, making sure there is good blood return every few mls of injection. If not the needle is against the vein wall and that is "not good". the drug can probably eat through the vein wall. And why there can be irreversible nerve damage
So, you choose, if possible, to have most of your injections in your weaker arm.
Am I babbeling?
So, the pain in my left arm could be from chemo injection or it could be from Neupogen. Or maybe something else? It was so bad Friday night that Dani paged the oncall Oncologist. She usually does b/c I'm an idiot about these things. the Onco suggests I apply heat and elevate the arm. he's thinking Blood Clot. I'm thinking He's an idiot. We try heat. We try a towel heated in the drying. Didn't work. We ended up wrapping a heating pad around my arm with bandage gauze. The heat worked as long as it was on high enough to burn me. And maybe "worked" because I was cutting off my circulation pretty good. In fact, my inner elbow still has some damage from heat/friction. So I apply heat in a very limited way, to say the least. And there's no way I can sleep with the heat.
Oh well.
On the 1-10 pain scale I give it a 6. Other than that my hands might be a little swollen and my right thumb looks to be 2x the size of my left.
FELIZE CINCO DE MAYO!!!!!!!!
So besides my arm I'm feeling good. No Nausea so I decided to forgo Zofran & Lorazepam. I have a few Whiskey's to celebrate America's Toast to Mexico kicking French Butt. Why are we so fixated on the French losing battles?
Anyway, it seemed like I was tired when i went to bed but I guess not. The question is did the pain wake me or the lack of Lorazepam? I took it 7 days straight this time and it is highly addictive. i would like a painkiller for my arm except in that it might do the same thing....................I just lost my left contact. It's been bothering me for a while, guess I'll toss it now (I have a supply of extend-o-wear)..............OK. So I don't want to take a painkiller b/c I hate the thought of becoming dependent like I might have become on Lorazepam. No matter how slight. But I hate not sleeping, especially since I'm in pain. I almost did some shots of Makers Mark and even thought about taking my last Lorazepam, for a second. Then I thought; "Fuck it. There are way worse things I could be experiencing right now." So i guess I suck it up for a while and try not to be too pissy about the pain and lack of sleep. Wish Dani luck!
;)
And now, my left fingers are starting to hurt from typing. I should probably stop and take out my right contact.
FELIZ SEIS DE MAYO!
Peace
My Body Pathetic - Post Treatment Week 1 [C]
I'm in the worst shape of my life. Before I started this fun I was in the best shape of my life. Well..................I mean I was in good shape if you don't count that little berzerker traitor that was trying to kill me..........Little Fuck.
Where was I?
Oh yeah. So here I sit after 6months of doing nothing but fighting that little Fuck. I'm @184lbs (30lbs over), my muscles are crap, some periphrial neuropathy in my left arm along with some moderate pain, possible Lung damage, and my bone density has most likely been affected negatively. Hopefully my Doc will approve a density test. I have a Pulmonary Function test next week. The neuro damage is slight and may not be permanent.Hopefully the weight gain was due mostly to the Steroid Dexamethasone.
How to De-Jellofy? I'm gonna attempt to Walk to the Smithsonia Museum of American History. It's 2 miles due South, no elevation gain or loss. Sounds pathetic, doesn't it? Baby steps. This sucks.
I want a Camel Light.
Where was I?
Oh yeah. So here I sit after 6months of doing nothing but fighting that little Fuck. I'm @184lbs (30lbs over), my muscles are crap, some periphrial neuropathy in my left arm along with some moderate pain, possible Lung damage, and my bone density has most likely been affected negatively. Hopefully my Doc will approve a density test. I have a Pulmonary Function test next week. The neuro damage is slight and may not be permanent.Hopefully the weight gain was due mostly to the Steroid Dexamethasone.
How to De-Jellofy? I'm gonna attempt to Walk to the Smithsonia Museum of American History. It's 2 miles due South, no elevation gain or loss. Sounds pathetic, doesn't it? Baby steps. This sucks.
I want a Camel Light.
Sunday, April 30, 2006
I Feel Like Ass/Steroid Effects
DEXAMETHASON: Catabolic Steroid. Some Effects: Loss of Calcium from bones, potassium, protein, immune suppression. Weight Gain, increased appetite, salt retention, irritability, nervousness, insomnia, indigestion, fatigue, weakness. And Diverticulitis "may be a problem with this drug".
I think that steroid is as toxic as my chemo drugs. Explains why I can feel like I want to vomit and am hungry at the same time.
FRIDAY 4/28/06
Every Friday after chemo we would go to Whole Foods and get something tasty for my dinner. The IV of Zofran & Dexamethasone held off the nausea symptoms until at least the next day. No chance of that this time. By the time we started eating at 6PM (less than 2hrs after treatment) my taste buds were going quick and my stomach was starting to tell me things were not gonna be easy. I had to pop a Zofran right after dinner and lay down. If I was a normal person I might have vommited. But I really would rather not. I was exhausted and couldn't sleep. I attempted to go to bed around midnight, still feeling nauseas. It was too early for another Zofran. I was ready to pop some Sominex when Dani suggested Lorazepam...
FUN WITH LORAZEPAM
Lorazepam, Evil relative of Valium (Diazepam). Has a "High" addiction rate. Used for anxiety and for chemo patients to treat insomnia & nausea. I can use it in conjunction with Zofran. I have a 1mg script. The lowest dose is .25mgs. I used it 3 treatments ago for the first time. By the 3rd day I woke up feeling like a Blob-O-Jello that went on a bender. Feeling like that without the help of alcohol the night before sucks sooooooooo bad. I was a zombie all day. I decided the nausea and insomnia was a party compared to the Lorazepam and stopped taking it.
After my next treatment the nausea and insomnia was worse. reluctantly, I started back on Lorazepam. Took it for 5 days. My body seemed to adjust to it. Or I got used to the Blob feeling?
It still took some convincing on Dani's part for me to start up on Lorazepam again, but not much. I also popp a pepcid and some stool softeners, of course. I slept about 5-6hrs straight. Woo-Hoo.
Saturday
Wake up and pop a Zofran. I feel nauseas all day and weak. Don't think I did anything. It's beautiful out but I have no energy. I force Dani out into the night. A friend's Band was playing tonight and we said we were gonna go. I don't feel horrible but I can't drink, and I still have to worry about my Low Cell Count. The Chemo must have really helped that out. ;) I wasn't supposed to take Neupogen shots after my last treatment. The plan was to let my immune system recover on its own. but with low counts, the Fellow recommended that I continue on with it.
So I don't want to be around a lot of people in a smoky club. I get to stay home. yay. dani comes home smelling like a club. Man I miss that smell! Cabin fever is driving me crazy! I popped a Zofran and Lorazepam, pepcid, stoll softeners, and hit the hay.
I wonder if I could do the "Twelve Days of xmas" with drugs?
I sleep about 8-9hrs with only 1 wake up. Yay!
Insomnia is a problem. I rarely sleep through, waking up several times each night. All these drugs just wreaking havoc on me.
SUNDAY
I wake up alone at 1030. dani is at the Farmers market. I feel really nauseas and pop a Zofran. It won't help much. I don't want to go to market but Dani brings home a few bags of Free Fresh Food every Sunday. I go to help carry home the Loot. I'm almost making a conscientious effort to not vomit as I walk down to Dupont Circle. it's 15-30minute walk. Depending on how good I feel. Today was 30minutes. I get there and eat one of Lorries famous Blueberry Scones. Best Scone I've ever had. eric is always wonderful and, in Dani's words: "spoils me". At the end of market we fill up on lots-o-goodies and head home.
This almost constant feeling of nausea sucks ass. I will be so much happier when it's gone. Dani is still somehow feeding me 3x/day, with nausea and lack of taste and all. it can only get better from here, eh?
Peace
I think that steroid is as toxic as my chemo drugs. Explains why I can feel like I want to vomit and am hungry at the same time.
FRIDAY 4/28/06
Every Friday after chemo we would go to Whole Foods and get something tasty for my dinner. The IV of Zofran & Dexamethasone held off the nausea symptoms until at least the next day. No chance of that this time. By the time we started eating at 6PM (less than 2hrs after treatment) my taste buds were going quick and my stomach was starting to tell me things were not gonna be easy. I had to pop a Zofran right after dinner and lay down. If I was a normal person I might have vommited. But I really would rather not. I was exhausted and couldn't sleep. I attempted to go to bed around midnight, still feeling nauseas. It was too early for another Zofran. I was ready to pop some Sominex when Dani suggested Lorazepam...
FUN WITH LORAZEPAM
Lorazepam, Evil relative of Valium (Diazepam). Has a "High" addiction rate. Used for anxiety and for chemo patients to treat insomnia & nausea. I can use it in conjunction with Zofran. I have a 1mg script. The lowest dose is .25mgs. I used it 3 treatments ago for the first time. By the 3rd day I woke up feeling like a Blob-O-Jello that went on a bender. Feeling like that without the help of alcohol the night before sucks sooooooooo bad. I was a zombie all day. I decided the nausea and insomnia was a party compared to the Lorazepam and stopped taking it.
After my next treatment the nausea and insomnia was worse. reluctantly, I started back on Lorazepam. Took it for 5 days. My body seemed to adjust to it. Or I got used to the Blob feeling?
It still took some convincing on Dani's part for me to start up on Lorazepam again, but not much. I also popp a pepcid and some stool softeners, of course. I slept about 5-6hrs straight. Woo-Hoo.
Saturday
Wake up and pop a Zofran. I feel nauseas all day and weak. Don't think I did anything. It's beautiful out but I have no energy. I force Dani out into the night. A friend's Band was playing tonight and we said we were gonna go. I don't feel horrible but I can't drink, and I still have to worry about my Low Cell Count. The Chemo must have really helped that out. ;) I wasn't supposed to take Neupogen shots after my last treatment. The plan was to let my immune system recover on its own. but with low counts, the Fellow recommended that I continue on with it.
So I don't want to be around a lot of people in a smoky club. I get to stay home. yay. dani comes home smelling like a club. Man I miss that smell! Cabin fever is driving me crazy! I popped a Zofran and Lorazepam, pepcid, stoll softeners, and hit the hay.
I wonder if I could do the "Twelve Days of xmas" with drugs?
I sleep about 8-9hrs with only 1 wake up. Yay!
Insomnia is a problem. I rarely sleep through, waking up several times each night. All these drugs just wreaking havoc on me.
SUNDAY
I wake up alone at 1030. dani is at the Farmers market. I feel really nauseas and pop a Zofran. It won't help much. I don't want to go to market but Dani brings home a few bags of Free Fresh Food every Sunday. I go to help carry home the Loot. I'm almost making a conscientious effort to not vomit as I walk down to Dupont Circle. it's 15-30minute walk. Depending on how good I feel. Today was 30minutes. I get there and eat one of Lorries famous Blueberry Scones. Best Scone I've ever had. eric is always wonderful and, in Dani's words: "spoils me". At the end of market we fill up on lots-o-goodies and head home.
This almost constant feeling of nausea sucks ass. I will be so much happier when it's gone. Dani is still somehow feeding me 3x/day, with nausea and lack of taste and all. it can only get better from here, eh?
Peace
Saturday, April 29, 2006
4:18PM, 4/28/06
This might be a rambling, long ass one, but bear with me. I kind of feel like ass. More than usual. i will try to be entertaining as always. take your time. There are some necessary tangents in here. But I believe it will be damn entertaining!
4/28/06 9:35AM
We arrive at the hospital early. I've had only a few hours sleep and might be just a tad hung over. We have some Thank yous to hand off. 99% Of The Cancer Staff have been phenomenal. Incredible people with a gift of kindness like none I've ever seen. First we drop off a Card and cookies to the front desk people of the Lombardi Cancer Center. plus a personal card to my first Nurse Case Coordinator, Betsy.
Now we head off to the basement floor of Bles. My Dr. and her team have been relocated there. Dani is worried that it will tense, especially with Kim. i tell her not to worry and remind her: NO COOKIES FOR THEM!!!!!!!!
FUCK THEM - TANGENT I
Last Monday Dani called Angela who is the Radiology Coordinator at Georgetown because we were told we could schedule my PET Scan. Angela, who is also amazing, says she never got the consent letter from my Dr. as needed. the Incompetent fuck heads started the process a month ago, supposedly. Two letters need to be sent; one to my insurer and one to Radiology. This is done by my Dr.'s Nurse Caseworker and the Admin Asst., Kim.
My last PET Scan "approval process" begin in December and I finally got approval in late February with a Scan in March. This was also a Cluster Fuck in which Kim was involved with my first Nurse Caseworker, Betsy. we learned the first time who was at fault because Angela keeps records of all conversations. A CMA procedure I assume she felt is very necessary, for obvious reasons.
So Dani calls Kim and very nicely asks what the problem is? kim seems confused on the whole procedure and then informs Dani She doesn't have time today to draft the letter because she has to go to clinic. Dani Relays this information to me. I reply:
"I'm done."
Anyone who knows me really knows what that means. I say it politely and calm but I'm on the edge of pure evil hatred. I'm pissed beyond description and barely containing my sicilian temper. i tell her to get ready, we are paying them a visit. i jump in the shower and think. All I can think is what Kim said: "I don't have time today". it repeats in my head and I start saying "No. No She did not".
i get out of the shower and dani is worried. she's never seen this in me and she's not sure if we should go. she doesn't think it will do any good if we piss people off. i tell her "I'm not waiting 3 months for my PET Scan. Nothing gets accomplished by Phone, i'm going to do this in person."
We head to the Hospital. Dani voices her concerns again; "I don't think a confrontation will accomplish anything." I respond: "Don't worry. I'm done with Kim. I'm going to her Supervisor"
In hindsight, Dani's concern was amusing. it's usually She you don't want to mess with. I think it threw her Since it was I who was really pissed off and she's never seen me like that. I think Dani thought I might hunt down Kim and tear her a knew one. LOL :D
We get to the Lombardi front desk and I tell them "I can't seem to get my PET Scan scheduled, may I speak with Kim's Supervisor?" Five minutes later the Clinical Administrator, Phyllis, comes out and invites us to her office. We calmly explain everything to her and her eyes bug out when we mention the 3 month approval process for my last Scan. And I ask in the most subtle sarcastic way I can: "It is important to get these Scans on time, no?" She assures us that someone is screwing up, apologizes, and promises to have this resolved in 24hrs after She talks with all parties involved. And no, not having time is never acceptable.
We walk out feeling very relaxed. Kim's gonna get reamed and I'm so happy about it. We've been so nice to everyone I have no qualms about this at all. it needed to be done and we didn't need to be worried about when my PET was gonna be approved. I need the Scan right after chemo is done. very dangerous to discontinue chemo if I still have Cancer.
It takes two days, but Phyllis calls us with the news that all is taken care of and we Can schedule my Scan when needed. Taint gonna complain about that. God Bless her.
TANGENT I COMPLETED
We check in with Kim and have a seat. Med Tech Antoinette comes and gets us. We Love her. She draws my blood, takes my vitals, and then we wait. As usual, the Dr. is running late. finally a fellow steps in and does a preliminary. I discuss some newish symptoms.
*WARNING* TMI
My left hand is numb and tingles on occassion
My right hand is swollen.
I've had one decent crap in the last two weeks, the day before today, in fact. I've been crapping bricks, with some blood, and I went up to 6-700mg of the stool softener Docusate Sodium. i continued the Docusate for a full day after I stopped the Zofran. This caused me to have @8-10 unpleasent Movements each day for the next two days.
before last treatment I had a bloody incident which might have implied a hemmorhoid. My Dr. and I both seemed a little uncomfortable with the idea of a butt exam so we both agreed to see how things "progressed".
The fellow was only concerned with the possible neurological damage. since it wasn't severe he recommended that I finish my treatment. Thanks Einstein.
TMI COMPLETED
My Oncologist finally gets in to see me around 11AM. she was in a good mood and happy to see that I was about to "Graduate". she asked me if there was any other problems. When i said "No" she said, with a smirk; "No wrestling?" I blurted back "Oh plenty of Wrestling, just no problems."
WRESTLING TMI
This is an interesting communication "issue" The Last treatment I had complained of shortness of breath. The Dr. aske if it was resting shortness or during exertion. Dani and I play wrestle a lot and I exhaust quickly from that so i said "during exertion, when we are wrestling." The Dr. said "Wrestling?" I looked at Dani. The Doc is foreign. Dani decided that I might be using a euphemism. I wasn't. I just didn't want to embarrass dani so why mention the worse incident? it was a bad incident so i guess maybe I should have been straight forward.
Dani looked at the Doctor and said "Actually, it was while we were fooling around." DOH! It did look like I was gonna pass out after it happened. the Dr had a small smile on her face and I had my little shit eating grin. But for one of the few times in my life, I blushed a little. Dani's frankness blindsided me. the doctor approved me for a Pulmonary test after the PET Scan. Something else to schedule with the bag-o-incompetent shithead Kim.
WRESTLING TMI COMPLETED
The Doctors humor regarding wrestling made me smile like never before. But my lung capacity did seem better the last two weeks. we go back to Shitheads desk and schedule the Pulminary Test. It was rough. rough in that Shithead had to call the Pulminary tech and read the 'script verbatim. we then had a run in with the Nurse Caseworker who showed us a copy of the letter she sent to my insurer but admitted She didn't no Radiology needed one also. Oy vey!
It's @12PM now. we are late for my treatment in Infusion. we need to go to The BMTx floor and drop of cookies and a card for that Staff. We are kind of dissapointed my last treatment wasn't there but it probably, in hindsight, saved us some emotional blubbering. Almost all my infusion treatments were there and we became close. No one we recognize is at the front desk but the card has the 4 Nurses names on it that we dealt with the most. So we hand of the Thank You and run out.
Infusion Central: We hand off my chart to the desk and turn around to see Betsy. She Tracked us down to thank us for the card!!!!! Damn. Dani does most of the talking, tears welling up in her eyes. I say a few words and almost lose it. Damn it again.
I forgot to mention that my Absolute Neutrophil Count is low and to call the Doc for treatment approval. Apparently it's below the threshold where treatment is advise. Because treatment will knock it down more and I become highly susceptible to infection. And also my cell count may then be even lower for next treatment. However, I have no more treatments so I don't "need" to recover my cell counts in 2 weeks. i just need to be extra careful with hygiene. and if I get sick most likely it won't be worse than Cancer (knock on Wood). :)
So the wait is a little longer while they discuss my counts with the Pharmacy and then they decide to call my doc.
*NOTE* -TANGENT III
Vinblastine Label : "Do not remove covering until moment of injection. Fatal if given intrathecally. For intravenous use only." This warning is always attached to vinblastine syringes. A chemo drug with a similar name is delivered intrathecally, or in laymens terms: injected into the spinal canal. A healthcare provider, somewhere, inadvertently delivered vinblastine intrathecally. This proved instantly fatal to the patient on the recieving end of this mistake. OOPS. And thus they now know it's fatal through the spinal canal and now they have a warning label on all vinblastine syringes. This would be called an Iatrogenic Death. A nice way to say Death by Doctor/Nurse/Technician.
I remember "iatrogenic" from a report regarding an undetermined bunny death during my days at a Pharma Testing Company. They never proved I killed the Wabbit but the evidence pointed to an Iatrogenic "incident"! :D
TANGENT III COMPLETE.
Anyway....
At 2:30 I start treatment. the Nurse gets me with One Stick!!!! That is the advantage of the Infusion Nurses. They Hit me a lot better. First my anti-nausea meds. Then the Nurse does the two slo bolus pushes, 15 minute bleomycin, and then I get hooked up to the much anticipated 60 minute infusion of Adriamycin. Dani and I have been laughing all day. I'm working on little sleep and no food. And one point I go into my new laugh-no-air-intake routine and almost pass out. The end is getting near and we discuss the anti-climatic nature of this. i'll be done with chemo but not 1005 well. it's also anti-climatic because I've spent so little time in the Infusion Ward. we don't recognize the Nurse who delivered my drugs and she didn't recognize us.
4:18 PM: The Infusion pump stops. I note the time because it seems to be a milestone. From my beginning in the George Washington ER on 11/04/06 to the end of chemo at Georgetown on 4/28/06, 4:18 PM. We've been through a Lifetime, Dani & I. At least it seems to be a lifetime.
We walk out in our own little World, my arm draped around Danis Shoulders. She's quietly sobbing. I have tears in my eyes and I'm barely holding it together. I also have a smile on my lips. Today is one of the most beautiful days in my Life. The longest struggle of my life, for my life, is over.
In about two hours the symptoms will start. It will be by far the quickest onset of chemo side effects ever for me.
4/28/06 9:35AM
We arrive at the hospital early. I've had only a few hours sleep and might be just a tad hung over. We have some Thank yous to hand off. 99% Of The Cancer Staff have been phenomenal. Incredible people with a gift of kindness like none I've ever seen. First we drop off a Card and cookies to the front desk people of the Lombardi Cancer Center. plus a personal card to my first Nurse Case Coordinator, Betsy.
Now we head off to the basement floor of Bles. My Dr. and her team have been relocated there. Dani is worried that it will tense, especially with Kim. i tell her not to worry and remind her: NO COOKIES FOR THEM!!!!!!!!
FUCK THEM - TANGENT I
Last Monday Dani called Angela who is the Radiology Coordinator at Georgetown because we were told we could schedule my PET Scan. Angela, who is also amazing, says she never got the consent letter from my Dr. as needed. the Incompetent fuck heads started the process a month ago, supposedly. Two letters need to be sent; one to my insurer and one to Radiology. This is done by my Dr.'s Nurse Caseworker and the Admin Asst., Kim.
My last PET Scan "approval process" begin in December and I finally got approval in late February with a Scan in March. This was also a Cluster Fuck in which Kim was involved with my first Nurse Caseworker, Betsy. we learned the first time who was at fault because Angela keeps records of all conversations. A CMA procedure I assume she felt is very necessary, for obvious reasons.
So Dani calls Kim and very nicely asks what the problem is? kim seems confused on the whole procedure and then informs Dani She doesn't have time today to draft the letter because she has to go to clinic. Dani Relays this information to me. I reply:
"I'm done."
Anyone who knows me really knows what that means. I say it politely and calm but I'm on the edge of pure evil hatred. I'm pissed beyond description and barely containing my sicilian temper. i tell her to get ready, we are paying them a visit. i jump in the shower and think. All I can think is what Kim said: "I don't have time today". it repeats in my head and I start saying "No. No She did not".
i get out of the shower and dani is worried. she's never seen this in me and she's not sure if we should go. she doesn't think it will do any good if we piss people off. i tell her "I'm not waiting 3 months for my PET Scan. Nothing gets accomplished by Phone, i'm going to do this in person."
We head to the Hospital. Dani voices her concerns again; "I don't think a confrontation will accomplish anything." I respond: "Don't worry. I'm done with Kim. I'm going to her Supervisor"
In hindsight, Dani's concern was amusing. it's usually She you don't want to mess with. I think it threw her Since it was I who was really pissed off and she's never seen me like that. I think Dani thought I might hunt down Kim and tear her a knew one. LOL :D
We get to the Lombardi front desk and I tell them "I can't seem to get my PET Scan scheduled, may I speak with Kim's Supervisor?" Five minutes later the Clinical Administrator, Phyllis, comes out and invites us to her office. We calmly explain everything to her and her eyes bug out when we mention the 3 month approval process for my last Scan. And I ask in the most subtle sarcastic way I can: "It is important to get these Scans on time, no?" She assures us that someone is screwing up, apologizes, and promises to have this resolved in 24hrs after She talks with all parties involved. And no, not having time is never acceptable.
We walk out feeling very relaxed. Kim's gonna get reamed and I'm so happy about it. We've been so nice to everyone I have no qualms about this at all. it needed to be done and we didn't need to be worried about when my PET was gonna be approved. I need the Scan right after chemo is done. very dangerous to discontinue chemo if I still have Cancer.
It takes two days, but Phyllis calls us with the news that all is taken care of and we Can schedule my Scan when needed. Taint gonna complain about that. God Bless her.
TANGENT I COMPLETED
We check in with Kim and have a seat. Med Tech Antoinette comes and gets us. We Love her. She draws my blood, takes my vitals, and then we wait. As usual, the Dr. is running late. finally a fellow steps in and does a preliminary. I discuss some newish symptoms.
*WARNING* TMI
My left hand is numb and tingles on occassion
My right hand is swollen.
I've had one decent crap in the last two weeks, the day before today, in fact. I've been crapping bricks, with some blood, and I went up to 6-700mg of the stool softener Docusate Sodium. i continued the Docusate for a full day after I stopped the Zofran. This caused me to have @8-10 unpleasent Movements each day for the next two days.
before last treatment I had a bloody incident which might have implied a hemmorhoid. My Dr. and I both seemed a little uncomfortable with the idea of a butt exam so we both agreed to see how things "progressed".
The fellow was only concerned with the possible neurological damage. since it wasn't severe he recommended that I finish my treatment. Thanks Einstein.
TMI COMPLETED
My Oncologist finally gets in to see me around 11AM. she was in a good mood and happy to see that I was about to "Graduate". she asked me if there was any other problems. When i said "No" she said, with a smirk; "No wrestling?" I blurted back "Oh plenty of Wrestling, just no problems."
WRESTLING TMI
This is an interesting communication "issue" The Last treatment I had complained of shortness of breath. The Dr. aske if it was resting shortness or during exertion. Dani and I play wrestle a lot and I exhaust quickly from that so i said "during exertion, when we are wrestling." The Dr. said "Wrestling?" I looked at Dani. The Doc is foreign. Dani decided that I might be using a euphemism. I wasn't. I just didn't want to embarrass dani so why mention the worse incident? it was a bad incident so i guess maybe I should have been straight forward.
Dani looked at the Doctor and said "Actually, it was while we were fooling around." DOH! It did look like I was gonna pass out after it happened. the Dr had a small smile on her face and I had my little shit eating grin. But for one of the few times in my life, I blushed a little. Dani's frankness blindsided me. the doctor approved me for a Pulmonary test after the PET Scan. Something else to schedule with the bag-o-incompetent shithead Kim.
WRESTLING TMI COMPLETED
The Doctors humor regarding wrestling made me smile like never before. But my lung capacity did seem better the last two weeks. we go back to Shitheads desk and schedule the Pulminary Test. It was rough. rough in that Shithead had to call the Pulminary tech and read the 'script verbatim. we then had a run in with the Nurse Caseworker who showed us a copy of the letter she sent to my insurer but admitted She didn't no Radiology needed one also. Oy vey!
It's @12PM now. we are late for my treatment in Infusion. we need to go to The BMTx floor and drop of cookies and a card for that Staff. We are kind of dissapointed my last treatment wasn't there but it probably, in hindsight, saved us some emotional blubbering. Almost all my infusion treatments were there and we became close. No one we recognize is at the front desk but the card has the 4 Nurses names on it that we dealt with the most. So we hand of the Thank You and run out.
Infusion Central: We hand off my chart to the desk and turn around to see Betsy. She Tracked us down to thank us for the card!!!!! Damn. Dani does most of the talking, tears welling up in her eyes. I say a few words and almost lose it. Damn it again.
I forgot to mention that my Absolute Neutrophil Count is low and to call the Doc for treatment approval. Apparently it's below the threshold where treatment is advise. Because treatment will knock it down more and I become highly susceptible to infection. And also my cell count may then be even lower for next treatment. However, I have no more treatments so I don't "need" to recover my cell counts in 2 weeks. i just need to be extra careful with hygiene. and if I get sick most likely it won't be worse than Cancer (knock on Wood). :)
So the wait is a little longer while they discuss my counts with the Pharmacy and then they decide to call my doc.
*NOTE* -TANGENT III
Vinblastine Label : "Do not remove covering until moment of injection. Fatal if given intrathecally. For intravenous use only." This warning is always attached to vinblastine syringes. A chemo drug with a similar name is delivered intrathecally, or in laymens terms: injected into the spinal canal. A healthcare provider, somewhere, inadvertently delivered vinblastine intrathecally. This proved instantly fatal to the patient on the recieving end of this mistake. OOPS. And thus they now know it's fatal through the spinal canal and now they have a warning label on all vinblastine syringes. This would be called an Iatrogenic Death. A nice way to say Death by Doctor/Nurse/Technician.
I remember "iatrogenic" from a report regarding an undetermined bunny death during my days at a Pharma Testing Company. They never proved I killed the Wabbit but the evidence pointed to an Iatrogenic "incident"! :D
TANGENT III COMPLETE.
Anyway....
At 2:30 I start treatment. the Nurse gets me with One Stick!!!! That is the advantage of the Infusion Nurses. They Hit me a lot better. First my anti-nausea meds. Then the Nurse does the two slo bolus pushes, 15 minute bleomycin, and then I get hooked up to the much anticipated 60 minute infusion of Adriamycin. Dani and I have been laughing all day. I'm working on little sleep and no food. And one point I go into my new laugh-no-air-intake routine and almost pass out. The end is getting near and we discuss the anti-climatic nature of this. i'll be done with chemo but not 1005 well. it's also anti-climatic because I've spent so little time in the Infusion Ward. we don't recognize the Nurse who delivered my drugs and she didn't recognize us.
4:18 PM: The Infusion pump stops. I note the time because it seems to be a milestone. From my beginning in the George Washington ER on 11/04/06 to the end of chemo at Georgetown on 4/28/06, 4:18 PM. We've been through a Lifetime, Dani & I. At least it seems to be a lifetime.
We walk out in our own little World, my arm draped around Danis Shoulders. She's quietly sobbing. I have tears in my eyes and I'm barely holding it together. I also have a smile on my lips. Today is one of the most beautiful days in my Life. The longest struggle of my life, for my life, is over.
In about two hours the symptoms will start. It will be by far the quickest onset of chemo side effects ever for me.
Friday, April 28, 2006
Fuck Cancer!!!!!!!
Hi. I be wasted so I'll go against my better judgement.
I've become a little superstitious.We helped a friend move tonight.
I also took a drag from a Cuban Cigar. Never had one before, how could I refuse? Wow it was smooth!
Anyway. tomorrow is my LAST chemo. I mean today is my last chemo. I'll probably start treatment in less than 12 hours. The last few treatments have been rough, as expected. I've had maybe 2 out of 14 days between treatments were I've felt perfectly fine. Taint NO Cancer left so the chemo wreaks havoc on my healthy cells/tissue/organs. Oh Fucking well. The difference between too much chemo and too little chemo is the difference between life & death. Fuck cancer! I kicked its Fucking ass! Fuck "remission"! That's defeatist. I'm done with Cancer. It's gone and it can kiss my ass! I will never see it again!
Do you know who I am? I'M RICK JAAAAAAMES Bitch!
I'm sorry. I need to give credit where credit is due:
Dani & I kicked Cancers ass! She kept me healthy. She made sure I ate 3 meals/day since this started back in November. Do you know how Fucking difficult it is to feed someone with no appetite for 6 months? Taint no picnic, to say the least. I wouldn't have eaten without her, I wouldn't have cared. And my ability to fight this Fucker would have been greatly diminished. She took over everything and gave me one job: "To get better". She worried about all other details of life. I might not be here if not for her. She put up with the worst I've ever given. She accepted and absorbed all those many days when I said; "Dani, I'm not well, watch out." Those were my words, in so many ways, that I felt like shit and I would probably lash out. I'm not sure if this was unique to me. It was like I would wake up and know. Know that I felt like ass and I could contain my anquish for only so long. So I knew and would warn Dani: "Things were OK now but I don't know how long I can hold it."
Yet There's not a single day we didn't laugh.
That's another thing I need to say about Dani. I look really healthy overall. I have an almost complete head of hair and I'm not under weight. My eyebrows are missing, but that is a small sign that something might be wrong. Some might think she is over protective about my condition. But she knows. She knows I look healthier than I am and that I understate my condition to any that ask.
Dani can read my face and I don't lie to her.
Example: we were at a friends house a few days after chemo. It was during the college BBall tournament, George Masons final game. I felt well enough to go out at the beginning of the night. Everyone was oblivious to my condition, which was to be expected. dani looked at me and I flashed a smile...........the smile. It is my full teeth smile, flashing my upper and lower teeth. It means all is not well. I was sick as a dog. Feeling so Nauseas that I could vomit on the spot. But I held it in. Leaving was not an option, unless I wanted to vomit. And I don't vomit, usually. So I wanted to stay seated in our friends house. i sat in a chair, kind of scrunched up, for hours. i just wanted to feel OK. you know what it's like? After a while we left and the first words out of Dani's mouth were: "You aren't well, are you?" No. But I held it in.
I can hide most from most but nothing from her. Still;
There's not a single day we haven't laughed. Almost every day we laugh so hard I think we are gonna bust a spleen. You know what I mean? that's the best laughter known to Humankind.
Good Spirits & Good food. Add a little chemo and all is Right.
I have my PET Scan in early May. But Fuck superstition. WE are DONE with Cancer. And It can kiss OUR FUCKING ASS.”
I've become a little superstitious.We helped a friend move tonight.
I also took a drag from a Cuban Cigar. Never had one before, how could I refuse? Wow it was smooth!
Anyway. tomorrow is my LAST chemo. I mean today is my last chemo. I'll probably start treatment in less than 12 hours. The last few treatments have been rough, as expected. I've had maybe 2 out of 14 days between treatments were I've felt perfectly fine. Taint NO Cancer left so the chemo wreaks havoc on my healthy cells/tissue/organs. Oh Fucking well. The difference between too much chemo and too little chemo is the difference between life & death. Fuck cancer! I kicked its Fucking ass! Fuck "remission"! That's defeatist. I'm done with Cancer. It's gone and it can kiss my ass! I will never see it again!
Do you know who I am? I'M RICK JAAAAAAMES Bitch!
I'm sorry. I need to give credit where credit is due:
Dani & I kicked Cancers ass! She kept me healthy. She made sure I ate 3 meals/day since this started back in November. Do you know how Fucking difficult it is to feed someone with no appetite for 6 months? Taint no picnic, to say the least. I wouldn't have eaten without her, I wouldn't have cared. And my ability to fight this Fucker would have been greatly diminished. She took over everything and gave me one job: "To get better". She worried about all other details of life. I might not be here if not for her. She put up with the worst I've ever given. She accepted and absorbed all those many days when I said; "Dani, I'm not well, watch out." Those were my words, in so many ways, that I felt like shit and I would probably lash out. I'm not sure if this was unique to me. It was like I would wake up and know. Know that I felt like ass and I could contain my anquish for only so long. So I knew and would warn Dani: "Things were OK now but I don't know how long I can hold it."
Yet There's not a single day we didn't laugh.
That's another thing I need to say about Dani. I look really healthy overall. I have an almost complete head of hair and I'm not under weight. My eyebrows are missing, but that is a small sign that something might be wrong. Some might think she is over protective about my condition. But she knows. She knows I look healthier than I am and that I understate my condition to any that ask.
Dani can read my face and I don't lie to her.
Example: we were at a friends house a few days after chemo. It was during the college BBall tournament, George Masons final game. I felt well enough to go out at the beginning of the night. Everyone was oblivious to my condition, which was to be expected. dani looked at me and I flashed a smile...........the smile. It is my full teeth smile, flashing my upper and lower teeth. It means all is not well. I was sick as a dog. Feeling so Nauseas that I could vomit on the spot. But I held it in. Leaving was not an option, unless I wanted to vomit. And I don't vomit, usually. So I wanted to stay seated in our friends house. i sat in a chair, kind of scrunched up, for hours. i just wanted to feel OK. you know what it's like? After a while we left and the first words out of Dani's mouth were: "You aren't well, are you?" No. But I held it in.
I can hide most from most but nothing from her. Still;
There's not a single day we haven't laughed. Almost every day we laugh so hard I think we are gonna bust a spleen. You know what I mean? that's the best laughter known to Humankind.
Good Spirits & Good food. Add a little chemo and all is Right.
I have my PET Scan in early May. But Fuck superstition. WE are DONE with Cancer. And It can kiss OUR FUCKING ASS.”
Thursday, April 20, 2006
Landlord/Tenent Battle
Dani got a rude knock on her door this past easter sunday. It was the new "owner" of the building with a Notice To Vacate. He's such a Fuckhead. Freaked dani out and I tried to calm her down. On Monday she brought the Letter to her Lawyer. The response:
"We are in receipt of your Notice to Vacate to the aboved referenced unit and find it a curious way to introduce a new landlord to the tenents. Nothing like starting out on a friendly footing."
The sarcasm and legal points get better after that. She ends with:
"Your Notice to Vacate can only be regarded, under these circumstances, as an improper retaliatory effort to intimidate our client. Please fax me evidence of your client's ownership of the building and DCRA registration. I shall therafter respond to your notice."
If I haven't discussed this before here; DC has the strongest tenent rights laws in the Nation. As one Real Estate Investor/Owner said to me: "In DC you pay, you stay." Dani's Lawyer is/was the Chair of the Lawyer/Tenents Association and the Biggest Gun in DC. I told my boss (at the restaurant I was working) of Dani's problem and he talked to her, who happened to be his lawyer. She wasn't taking anymore cases but was very interested in Dani's situation and scooped it up.
Some Lawyers actually have Souls. ;)
The trouble with Dani's apartment began in August.
"We are in receipt of your Notice to Vacate to the aboved referenced unit and find it a curious way to introduce a new landlord to the tenents. Nothing like starting out on a friendly footing."
The sarcasm and legal points get better after that. She ends with:
"Your Notice to Vacate can only be regarded, under these circumstances, as an improper retaliatory effort to intimidate our client. Please fax me evidence of your client's ownership of the building and DCRA registration. I shall therafter respond to your notice."
If I haven't discussed this before here; DC has the strongest tenent rights laws in the Nation. As one Real Estate Investor/Owner said to me: "In DC you pay, you stay." Dani's Lawyer is/was the Chair of the Lawyer/Tenents Association and the Biggest Gun in DC. I told my boss (at the restaurant I was working) of Dani's problem and he talked to her, who happened to be his lawyer. She wasn't taking anymore cases but was very interested in Dani's situation and scooped it up.
Some Lawyers actually have Souls. ;)
The trouble with Dani's apartment began in August.
Saturday, April 15, 2006
More Chemo -> More Side Effects -> More Drugs
The drugs I needed today to counter chemo:
8mg Zofran: for Nausea caused by chemo. I take two a day now for @7 days
4 100mgs Docusate Sodium: Stool softener. Need caused by Zofran
2 25mgs Diphenhydramide Hydrochloride: OTC "Sominex". For Insomnia caused by chemo
40mg Famotidine (Pepcid): For indigestion. Prophylacticly against Ulcers caused by the Steroid infused before chemo.
Another day i'll tell you about my 3 day experience with 1mg doses of Lorazepam, prescribed for insomnia. Shit Fucked me up!
my drug intake has increased gradually after each chemo.
Until then, peace.
8mg Zofran: for Nausea caused by chemo. I take two a day now for @7 days
4 100mgs Docusate Sodium: Stool softener. Need caused by Zofran
2 25mgs Diphenhydramide Hydrochloride: OTC "Sominex". For Insomnia caused by chemo
40mg Famotidine (Pepcid): For indigestion. Prophylacticly against Ulcers caused by the Steroid infused before chemo.
Another day i'll tell you about my 3 day experience with 1mg doses of Lorazepam, prescribed for insomnia. Shit Fucked me up!
my drug intake has increased gradually after each chemo.
Until then, peace.
Friday, April 14, 2006
No Chance For 100% recovery? Chemo Side Effects
Wow? Where have I been? Not sure. I'll try to fill in the timeline with lots of goodies. Right now I want to vent and whine. :p
4/14/06
I explained to the doctor that I experience a shortness of breath after I excert myself. This isn't the first time I noted this. The Fellow with her noted in an amazingly tactful way that I may be understating my discomfort. Honestly, no sarcasm in that statement. I was actually shocked by such an astute observation coming from anyone, much less a Fellow.
Reference Point: The Saturday Brandy dropped me off at the ER for my as of yet diagnosed Diverticulitus. I worked through the day bent over in pain. As she dropped me off I said to the effect: "I'm not sure I requires the ER, Maybe it's nothing to be concerned about?" I was less than a day from my Large intestine blowing out into my peritoneal cavity (almost certain death?) and spent 4 days in the hospital.
Reference Point: I don't remember how many days my right eye bothered me. Maybe a week. When I went to the ER I needed to wrap a towel over my eye. I had two Corneal Ulcers and I was hours from Septicemea. cause? Shitty contact care. by was that Optometrist pissed!
I wondered after each time whether or not I had learned my lesson. I guess not. But Third times a charm, no? :D
Back on Track
Soooooooooooooooooooooooo. My Dr. seems concerned about the shortness of breath. I feel like nothing is obstructing inhalation but I'm just not absorbing. Or so it seems. I'm not anemic. So She wants to do a Pulminary function Test after treatment. They don't seem to want to volunteer any information. This seems to be a pattern. Is ignorance bliss with Cancer patients? I don't work that way so I asked what might be causing this?
Dr. A: The Bleomycin (neoplastic Antibody)
Me: Oh. I'll recover?
Dr. A: No.
"No?" "No?" "No?"........................................Man that bugged the Fuck out of me. Why/How did I convince myself recovery would be 100%? I mean, outside the future chance of Cancer?
So, yes. I'm feeling sorry for myself. In the meantime Dr. A. reiterated that raddiation seems unlikely. They were concerned about the Lung Lesions but the sizes seem below the threshold. Irradiating the Lungs causes a 25% percent decrease in capacity!
So after getting home from chemo I started to re-educate myself on my chemo protocol.
Adriamycin "Can sometimes cause heart damage"
Fuck.
Now I'm really feeling sorry for myself. Dani to the rescue. she explains that Yes, Cancer Sucks. Once again, ALL Cancers Suck. And Yes, I may have some minor reduced functions. But why worry about future percentages and future issues? I'm alive and without the drugs I would be dead.
God I love her.
But I'm not at my past, especially right after treatment. I feel like feeling sorry for myself. At least for a short time. Then, after Im over it as usual, I'll look in the mirror, give myself the double Bird, and say:
FUCK YOU CANCER! KISS MY FUCKING ASS! "Damage/reduced function my ass!
:x
Below are the side effects, Short and Long Term.
Peace
Short term Effects:
Bleomycin: Common: nausea and vomiting (ask your doctor about drugs to counteract nausea), fever/chills after dose, cough, shortness of breath, mouth sores, itching, rash, loss of appetite; Less Common: confusion, faintness, wheezing; Rare: sudden/severe chest pain, sudden weakness in arms/legs.
Adriamycin: Common: nausea and vomiting (ask your doctor about drugs to counteract nausea), sores on mouth & lips; Less Common: cough, fever/chills, fast or irregular heartbeat, swelling of extremities, diarrhea; Rare: black stools, blood in urine, pinpoint red spots on skin, unusual bleeding, wheezing, skin rash/itching. Adriamycin may turn the urine red which is not blood and should disappear within 2 days.
Vinblastine: Common: nausea and vomiting (ask your doctor about drugs to counteract nausea), fever/chills after dose, cough, shortness of breath, mouth sores, itching, rash, loss of appetite; Less Common: confusion, faintness, wheezing, peripheral neuropathy (tingling & numbness in the hands and feet). Rare: sudden/severe chest pain, sudden weakness in arms/legs
Dacarbazine: Common: Redness, pain, or swelling at the site of injection, nausea, vomiting. Less Common: black stools, blood in urine or stool, cough, fever/chills, lower back/side pain, painful or difficult urination, pinpoint red spots on skin, sores in mouth and on lips.
Long Term Effects:
Bleomycin: hair loss (alopecia) during use - hair growth should return after treatment and lung (pulmonary) toxicity (doses should be monitored).
Adriamycin: hair loss (alopecia) during use - hair growth should return late in treatment or after treatment, possible sterility (weaker than some drugs) and heart toxicity (doses should be monitored)
Vinblastine: hair loss (alopecia) during use - hair growth should return after treatment and lung (pulmonary) toxicity (doses should be monitored), peripheral neuropathy (tingling & numbness in the hands and feet).
Dacarbazine: Some hair loss which should return after treatment, transient (shorter term) reduction in liver and kidney function.
4/14/06
I explained to the doctor that I experience a shortness of breath after I excert myself. This isn't the first time I noted this. The Fellow with her noted in an amazingly tactful way that I may be understating my discomfort. Honestly, no sarcasm in that statement. I was actually shocked by such an astute observation coming from anyone, much less a Fellow.
Reference Point: The Saturday Brandy dropped me off at the ER for my as of yet diagnosed Diverticulitus. I worked through the day bent over in pain. As she dropped me off I said to the effect: "I'm not sure I requires the ER, Maybe it's nothing to be concerned about?" I was less than a day from my Large intestine blowing out into my peritoneal cavity (almost certain death?) and spent 4 days in the hospital.
Reference Point: I don't remember how many days my right eye bothered me. Maybe a week. When I went to the ER I needed to wrap a towel over my eye. I had two Corneal Ulcers and I was hours from Septicemea. cause? Shitty contact care. by was that Optometrist pissed!
I wondered after each time whether or not I had learned my lesson. I guess not. But Third times a charm, no? :D
Back on Track
Soooooooooooooooooooooooo. My Dr. seems concerned about the shortness of breath. I feel like nothing is obstructing inhalation but I'm just not absorbing. Or so it seems. I'm not anemic. So She wants to do a Pulminary function Test after treatment. They don't seem to want to volunteer any information. This seems to be a pattern. Is ignorance bliss with Cancer patients? I don't work that way so I asked what might be causing this?
Dr. A: The Bleomycin (neoplastic Antibody)
Me: Oh. I'll recover?
Dr. A: No.
"No?" "No?" "No?"........................................Man that bugged the Fuck out of me. Why/How did I convince myself recovery would be 100%? I mean, outside the future chance of Cancer?
So, yes. I'm feeling sorry for myself. In the meantime Dr. A. reiterated that raddiation seems unlikely. They were concerned about the Lung Lesions but the sizes seem below the threshold. Irradiating the Lungs causes a 25% percent decrease in capacity!
So after getting home from chemo I started to re-educate myself on my chemo protocol.
Adriamycin "Can sometimes cause heart damage"
Fuck.
Now I'm really feeling sorry for myself. Dani to the rescue. she explains that Yes, Cancer Sucks. Once again, ALL Cancers Suck. And Yes, I may have some minor reduced functions. But why worry about future percentages and future issues? I'm alive and without the drugs I would be dead.
God I love her.
But I'm not at my past, especially right after treatment. I feel like feeling sorry for myself. At least for a short time. Then, after Im over it as usual, I'll look in the mirror, give myself the double Bird, and say:
FUCK YOU CANCER! KISS MY FUCKING ASS! "Damage/reduced function my ass!
:x
Below are the side effects, Short and Long Term.
Peace
Short term Effects:
Bleomycin: Common: nausea and vomiting (ask your doctor about drugs to counteract nausea), fever/chills after dose, cough, shortness of breath, mouth sores, itching, rash, loss of appetite; Less Common: confusion, faintness, wheezing; Rare: sudden/severe chest pain, sudden weakness in arms/legs.
Adriamycin: Common: nausea and vomiting (ask your doctor about drugs to counteract nausea), sores on mouth & lips; Less Common: cough, fever/chills, fast or irregular heartbeat, swelling of extremities, diarrhea; Rare: black stools, blood in urine, pinpoint red spots on skin, unusual bleeding, wheezing, skin rash/itching. Adriamycin may turn the urine red which is not blood and should disappear within 2 days.
Vinblastine: Common: nausea and vomiting (ask your doctor about drugs to counteract nausea), fever/chills after dose, cough, shortness of breath, mouth sores, itching, rash, loss of appetite; Less Common: confusion, faintness, wheezing, peripheral neuropathy (tingling & numbness in the hands and feet). Rare: sudden/severe chest pain, sudden weakness in arms/legs
Dacarbazine: Common: Redness, pain, or swelling at the site of injection, nausea, vomiting. Less Common: black stools, blood in urine or stool, cough, fever/chills, lower back/side pain, painful or difficult urination, pinpoint red spots on skin, sores in mouth and on lips.
Long Term Effects:
Bleomycin: hair loss (alopecia) during use - hair growth should return after treatment and lung (pulmonary) toxicity (doses should be monitored).
Adriamycin: hair loss (alopecia) during use - hair growth should return late in treatment or after treatment, possible sterility (weaker than some drugs) and heart toxicity (doses should be monitored)
Vinblastine: hair loss (alopecia) during use - hair growth should return after treatment and lung (pulmonary) toxicity (doses should be monitored), peripheral neuropathy (tingling & numbness in the hands and feet).
Dacarbazine: Some hair loss which should return after treatment, transient (shorter term) reduction in liver and kidney function.
Friday, March 24, 2006
Taste Buds, Hair, My Poor Laugh.
Fun With Food
Taste buds are back in full swing. Now if only I had an appetite! Last night Dani had her first Bee class. She invested in a couple of Hives last Spring. Now that She has some experience and questions, she decided to take a class. Anyway, she was gone for most the evening. I had to eat. If I didn't eat she would think that She could never leave me for long periods of time. It's so hard to eat when you have zero appetite. It's really hard when you have to make it yourself. So basically I ate last night so Dani wouldn't Yell at me. LOL! :D
Hair Emergency
I can't take it anymore. I haven't had a hair cut since October. Check out those photos on my webshot page. I might post some shots of the back of my hair today. Anyway, I stopped off at my hairdresser's Salon on the way back from getting a blood draw. I wanted to talk to her about it. Can't just show up for an appt. after 5 months, with thinning hair, almost no eyebrows, and say "Hey, got Hodgkins, can you fix my hair?"
So instead I did that today. The worse thing was I had to remove my hat for her to check out the damage. At first she wasn't going to bother with a cut until she saw how much hair I still had. She noted that it was very unhealthy and maybe a really short haircut would be in order. You really can't see it unless your close, but my hair does have a very "damaged" look to it. Kind of fragile/dry/frayed look to it. So I guees I'm getting buzzed by her next wednesday.
Where'd My Laugh Go?
Everyone remember my laugh? That loud, boisterous Cackle? 'Tis gone and maybe for good. I couldn't laugh for months because of the tumors in/arounde/on my lungs. Anytime I started to I would cough horribly. I mean I literaly didn't laugh for months. I stifled it if I felt it coming on. I can laugh now but it's different. It's kind of silent and I start to run out of oxygen. It's like I laugh as hard as I used to but it's muffled. It's kind of sad. If permanent then I think it's most unfortunate. Kind of like I lost a piece of who I was. A permanent reminder of what I went through. But still far superior to no laugh, eh?
Peace.
Taste buds are back in full swing. Now if only I had an appetite! Last night Dani had her first Bee class. She invested in a couple of Hives last Spring. Now that She has some experience and questions, she decided to take a class. Anyway, she was gone for most the evening. I had to eat. If I didn't eat she would think that She could never leave me for long periods of time. It's so hard to eat when you have zero appetite. It's really hard when you have to make it yourself. So basically I ate last night so Dani wouldn't Yell at me. LOL! :D
Hair Emergency
I can't take it anymore. I haven't had a hair cut since October. Check out those photos on my webshot page. I might post some shots of the back of my hair today. Anyway, I stopped off at my hairdresser's Salon on the way back from getting a blood draw. I wanted to talk to her about it. Can't just show up for an appt. after 5 months, with thinning hair, almost no eyebrows, and say "Hey, got Hodgkins, can you fix my hair?"
So instead I did that today. The worse thing was I had to remove my hat for her to check out the damage. At first she wasn't going to bother with a cut until she saw how much hair I still had. She noted that it was very unhealthy and maybe a really short haircut would be in order. You really can't see it unless your close, but my hair does have a very "damaged" look to it. Kind of fragile/dry/frayed look to it. So I guees I'm getting buzzed by her next wednesday.
Where'd My Laugh Go?
Everyone remember my laugh? That loud, boisterous Cackle? 'Tis gone and maybe for good. I couldn't laugh for months because of the tumors in/arounde/on my lungs. Anytime I started to I would cough horribly. I mean I literaly didn't laugh for months. I stifled it if I felt it coming on. I can laugh now but it's different. It's kind of silent and I start to run out of oxygen. It's like I laugh as hard as I used to but it's muffled. It's kind of sad. If permanent then I think it's most unfortunate. Kind of like I lost a piece of who I was. A permanent reminder of what I went through. But still far superior to no laugh, eh?
Peace.
Thursday, March 23, 2006
Food Purgatory
3/23/06 - Chemo +6. Food sucks way less. I think I almost have full taste back. It's like there was a film covering my mouth before. Very difficult to describe. I expect tomorrow I'll have full taste capabilities back.
Wednesday, March 22, 2006
Food Hell IV. Plus a Few Other Rants. TMI Warning!
3/22/06 - chemo +5. Boy does food still fucking suck. I do think it might be a little less bland but that' it. My bones ache. I think it's a side effect from gthe neupogen. I tire so easily/quickly. My body hair is almost all gone. I kind of feel like ass. I sometimes wonder if it's worse than I can tell.......maybe I've gotten used to feeling like ass and have adjusted? My Kidneys hurt for a few days after chemo. I was warned about that, my system is trying to flush out the toxins and cancer/tumors. I'm suppossed to stay extra hydrated but it's become difficult. I don't like drinking liquids. Gatorade is a little too rough on my system....I'm on a pepcid script now to prevent Ulcers from the steroid. I take Zofran 2x/day but it bottles me up so bad I feel like I'm giving Birth when I have a "Movement"
:D
The Dr. suggested a stool softener. These are things I can't think of for myself. I've probably popped more pills in these last 5 months than I have my entire life. I'm not used to thinking: "This sucks, what can I take for it?"
The Zofran does seem to be helping with the nausea. Just wish I had an appetite and that I could fucking taste food.
I think some of my problems are due to the steroid but am afraid to ask that they cut back on it. I don't ever want to have a vomit attack like I did the day after chemo. Don't even want to come close.
Trying to be nice
First, I'd like to make it clear that I am guilty of what I'm about to rant against next. I understand being at a loss for words. And please, no one take this personaly. OK? My Biggest Pet Peeve now is hearing this:
'Well, if you had to pick a Cancer, Hodgkins would be the one.' or:
'Well Hodgkins is highly curable.'
Again, I've said something to the same effect. Years ago when someone's brother I know was diagnosed with Hodgkins. But I
FUCKING HATE IT WITH A PASSION!
I've heard it several times. Last time I heard it was from the Radiologist at my PET Scan. I even try and be nice. But anyone who knows me, knows I have a very expressive face and that I have a hard time controlling it. If I had to "pick"? Jesus Fucking Christ! Think about it. Why not say:
"Well, as far as autoimmunne/degenerative diseases, Multiple Sclerosis isn't that bad.
Ya git the gist? I have Cancer. I will soon be in Remission (Please knock on wood). They call it remission for a reason. I need Check-ups/scans for the rest of my life. The fucking toxins they're using on me are God Damn Carcinogens.
So please, don't talk to cancer patients about "Good Cancers" or "High Survival Rates". You know what I like? I like humor. I like being called Cancer Boy. I like people just treating me like I don't have Cancer. I like people not treating me like I'm any where near death. I don't mind people asking me how I'm feeling.
Am I being difficult? Oh well. I get to set the rules on this, dammit!
I would also like to apologize to the person for what I said about Hodgkins.
On that note:
Cancer Can Kiss My Fucking Ass and It's not going to beat me Ever!
Peace and I love you all.
:D
The Dr. suggested a stool softener. These are things I can't think of for myself. I've probably popped more pills in these last 5 months than I have my entire life. I'm not used to thinking: "This sucks, what can I take for it?"
The Zofran does seem to be helping with the nausea. Just wish I had an appetite and that I could fucking taste food.
I think some of my problems are due to the steroid but am afraid to ask that they cut back on it. I don't ever want to have a vomit attack like I did the day after chemo. Don't even want to come close.
Trying to be nice
First, I'd like to make it clear that I am guilty of what I'm about to rant against next. I understand being at a loss for words. And please, no one take this personaly. OK? My Biggest Pet Peeve now is hearing this:
'Well, if you had to pick a Cancer, Hodgkins would be the one.' or:
'Well Hodgkins is highly curable.'
Again, I've said something to the same effect. Years ago when someone's brother I know was diagnosed with Hodgkins. But I
FUCKING HATE IT WITH A PASSION!
I've heard it several times. Last time I heard it was from the Radiologist at my PET Scan. I even try and be nice. But anyone who knows me, knows I have a very expressive face and that I have a hard time controlling it. If I had to "pick"? Jesus Fucking Christ! Think about it. Why not say:
"Well, as far as autoimmunne/degenerative diseases, Multiple Sclerosis isn't that bad.
Ya git the gist? I have Cancer. I will soon be in Remission (Please knock on wood). They call it remission for a reason. I need Check-ups/scans for the rest of my life. The fucking toxins they're using on me are God Damn Carcinogens.
So please, don't talk to cancer patients about "Good Cancers" or "High Survival Rates". You know what I like? I like humor. I like being called Cancer Boy. I like people just treating me like I don't have Cancer. I like people not treating me like I'm any where near death. I don't mind people asking me how I'm feeling.
Am I being difficult? Oh well. I get to set the rules on this, dammit!
I would also like to apologize to the person for what I said about Hodgkins.
On that note:
Cancer Can Kiss My Fucking Ass and It's not going to beat me Ever!
Peace and I love you all.
Tuesday, March 21, 2006
Food Hell III
3/21/06. Chemo +4 days. Food still sucks. Liquids suck. I think I'm sorry I started keeping track. ;)
Monday, March 20, 2006
Food Hell Part II
3/20/06 - Chemo +3 days. Food may be sucking a little less but overall it still really sucks. Liquids also still suck.
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