[9:27pm]
Tomorrow I get my first transfusion -- how exciting is that?? The concept is appalling! I mean, someone else's blood is going to be put into my heart. That's pretty, uh, intimate, or something...
Well, whoever it was, I appreciate it... even if they only donated blood for a few bucks. Plus, consider the blood type: O negative rocks!! Universal donors: that's some valuable blood there. Of course, it's worst to be on the receiving end of that equation, but it is cool nonetheless.
The strange part is how comfortable, in comparison, I am with chemotherapy. Chemo is a chemical, that means it's "clean" by definition, right? Plus, it's usually clear. On the other hand, blood just seems so dirty. Whoe knows where that's been! Plus, it looks like it's clogging up the IV line... all dark and whatnot, blood stains are hard to get out!
...of course, I'd rather a blood stain than spilling chemo on myself. That stuff can be vicious.
Monday, September 29, 2008
Sunday, September 28, 2008
['9-28-08] Looks can be Deceiving
[4:55pm]
Today was somewhat embarrassing. Liz, Barbara, Gloria, and I were planning on attending a symphony. One of the pieces was Rachmaninoff's "Rhapsody on a Theme by Paganini," which is a total selling point for me. So I *had* to go. The downside: I had to wear my HEPA/Vader mask.
Naturally, I was the only one wearing such a thing. So I was really standing out. At first, I panicked about what they thought about me: that I was infected with avian flu or something. But then, I got used to it. It wasn't all that bad, plus Liz was quite comforting.
There was only one comment about it. The guy next to me asked rather bluntly, "So, why the mask? Are you contagious or something?" I told him I wasn't, then he went into a lecture about how masks are necessary for the people in Taiwan or something. Apparently, smog is the least of their concerns.
Of course, during the symphony, my phone was off. During this time, I was getting calls from my local oncologist and Stanford. When I got home, I checked my messages: They got my labs and my blood counts were quite low:
White Blood Count: 0.2 (Basically, I have no immune system)
Hematocrit: 24.3 (For comparison, a hematocrit of under 28 merits a transfusion)
Hemoglobin: 8.5 (I'm even more anemic, but we all knew that)
So, my local oncologist is concerned that I might get a fever. Stanford expects the WBC to be so low, but does not want the RBC to be this low. Accordingly, I have a transfusion scheduled for Monday -- how exciting! Let's hope they can use the damn catheter this time!
Speaking of catheter: it sucks. They must have botched the placement or something, because it is absolutely impossible for me to sleep on my side. It gets to be quite painful. So, naturally, I get no sleep. I try to sleep on my back, but then at some part of the night I turn to me side, and later wake up in pain.
This has to be fixed.
Today was somewhat embarrassing. Liz, Barbara, Gloria, and I were planning on attending a symphony. One of the pieces was Rachmaninoff's "Rhapsody on a Theme by Paganini," which is a total selling point for me. So I *had* to go. The downside: I had to wear my HEPA/Vader mask.
Naturally, I was the only one wearing such a thing. So I was really standing out. At first, I panicked about what they thought about me: that I was infected with avian flu or something. But then, I got used to it. It wasn't all that bad, plus Liz was quite comforting.
There was only one comment about it. The guy next to me asked rather bluntly, "So, why the mask? Are you contagious or something?" I told him I wasn't, then he went into a lecture about how masks are necessary for the people in Taiwan or something. Apparently, smog is the least of their concerns.
Of course, during the symphony, my phone was off. During this time, I was getting calls from my local oncologist and Stanford. When I got home, I checked my messages: They got my labs and my blood counts were quite low:
White Blood Count: 0.2 (Basically, I have no immune system)
Hematocrit: 24.3 (For comparison, a hematocrit of under 28 merits a transfusion)
Hemoglobin: 8.5 (I'm even more anemic, but we all knew that)
So, my local oncologist is concerned that I might get a fever. Stanford expects the WBC to be so low, but does not want the RBC to be this low. Accordingly, I have a transfusion scheduled for Monday -- how exciting! Let's hope they can use the damn catheter this time!
Speaking of catheter: it sucks. They must have botched the placement or something, because it is absolutely impossible for me to sleep on my side. It gets to be quite painful. So, naturally, I get no sleep. I try to sleep on my back, but then at some part of the night I turn to me side, and later wake up in pain.
This has to be fixed.
Saturday, September 27, 2008
[9-27-08] Feeling Better
[10:19am]
Woot! I'm feeling much better! Well, at least in two truly annoying aspects. First, I don't seem to have any nausea anymore. Second, my stomach seems to be conceding... in that I am being allowed to store things there.
I know it's a gross subject, but I had to clarify this to Barbara on several occasions, so I thought I'd mention it here. Nausea can lead to vomoting, but vomiting does not necessarily need to be preceded by nausea. It can just happen. Spontaneously the stomach could reject something, and, well, there ya go.
Anyhow, while my stomach isn't "steel" at the moment, it is at least stable. Which is quite nice.
Still, I *am* ridiculously anemic at the moment... laughably so. Walking across the boat leaves my panting. I wonder what my hemoglobin is... I want my score recorded. :P
Woot! I'm feeling much better! Well, at least in two truly annoying aspects. First, I don't seem to have any nausea anymore. Second, my stomach seems to be conceding... in that I am being allowed to store things there.
I know it's a gross subject, but I had to clarify this to Barbara on several occasions, so I thought I'd mention it here. Nausea can lead to vomoting, but vomiting does not necessarily need to be preceded by nausea. It can just happen. Spontaneously the stomach could reject something, and, well, there ya go.
Anyhow, while my stomach isn't "steel" at the moment, it is at least stable. Which is quite nice.
Still, I *am* ridiculously anemic at the moment... laughably so. Walking across the boat leaves my panting. I wonder what my hemoglobin is... I want my score recorded. :P
Friday, September 26, 2008
[9-26-08] Mobilization Routine
[1:25pm]
Cytoxan has been... difficult. However, I am somehow pleased that the side effects are so apparent -- it means it is working. Maybe there isn't a correlation between side effects and chemotherapy effectiveness, but it still feels somewhat reassuring to feel what a chemo-patient is supposed to be feeling.
I mean, I was drinking beers and doing construction throughout ICE and Stanford V! Right now, water is difficult to drink and I can hardly get out of bed! Well, I'll get a PET/CT Scan in a few weeks; we'll see just how effective this has been.
Anyways, I thought I'd post a bit of my routine to help illustrate my situation:
7:00am Go to bathroom, take Rifampin (the drug that causes you to sweat and cry orange), drink lots of water, take Neupogen out of fridge, go back to sleep.
9:00am Take 2mg Ativan (dissolve on tongue, don't swallow!). I need the Ativan to eat; I need to eat to take the other pills. Eat a bagel...slowly. Take the Zofran and Compazine (other two anti-nausea pills). Drink lots of water.
9:30am Take Famotidine (reduces acid in stomach). Put Aquaguard over catheter dressing so that I can take a shower. Take a shower.
10:00am Take Cipro and Welbutrin (stomach should be able to handle it at this point). Inject 3 needles of Neupogen. Drink lots of water.
10:15am Take remaining drugs and flush catheter with Heparin. Brush teeth.
10:30am Go back to sleep.
That's my morning ritual. Takes a bit longer than reading the morning paper, eh? The key is to take things very slowly; my stomach is incredibly sensitive. Today I nearly puked from eating a bagel too fast, can you believe that?!? The bagel...my staple food. No wonder Barbara says I'm eating 1/4 what I normally eat.
Then, for the most part, I spend the day sleeping. For some reason, I have the uncanny ability to sleep FOREVER now. Which is strange because I usually have difficulty sleeping. Oh well, I'll take it!
On another note, I managed to withdraw from school yesterday. So, I'm out! It's a sad/scary feeling, but at least it allows me to move on. I'm no longer a student. Bah
Also, I'll be heading to a symphony Sunday with Liz, Barbara, and Gloria -- can you believe that? That means I'll be wearing my Darth Vader HEPA mask in a symphony hall! That should get some stares. But if Liz is cool with her date from the dark side, so am I.
Cytoxan has been... difficult. However, I am somehow pleased that the side effects are so apparent -- it means it is working. Maybe there isn't a correlation between side effects and chemotherapy effectiveness, but it still feels somewhat reassuring to feel what a chemo-patient is supposed to be feeling.
I mean, I was drinking beers and doing construction throughout ICE and Stanford V! Right now, water is difficult to drink and I can hardly get out of bed! Well, I'll get a PET/CT Scan in a few weeks; we'll see just how effective this has been.
Anyways, I thought I'd post a bit of my routine to help illustrate my situation:
7:00am Go to bathroom, take Rifampin (the drug that causes you to sweat and cry orange), drink lots of water, take Neupogen out of fridge, go back to sleep.
9:00am Take 2mg Ativan (dissolve on tongue, don't swallow!). I need the Ativan to eat; I need to eat to take the other pills. Eat a bagel...slowly. Take the Zofran and Compazine (other two anti-nausea pills). Drink lots of water.
9:30am Take Famotidine (reduces acid in stomach). Put Aquaguard over catheter dressing so that I can take a shower. Take a shower.
10:00am Take Cipro and Welbutrin (stomach should be able to handle it at this point). Inject 3 needles of Neupogen. Drink lots of water.
10:15am Take remaining drugs and flush catheter with Heparin. Brush teeth.
10:30am Go back to sleep.
That's my morning ritual. Takes a bit longer than reading the morning paper, eh? The key is to take things very slowly; my stomach is incredibly sensitive. Today I nearly puked from eating a bagel too fast, can you believe that?!? The bagel...my staple food. No wonder Barbara says I'm eating 1/4 what I normally eat.
Then, for the most part, I spend the day sleeping. For some reason, I have the uncanny ability to sleep FOREVER now. Which is strange because I usually have difficulty sleeping. Oh well, I'll take it!
On another note, I managed to withdraw from school yesterday. So, I'm out! It's a sad/scary feeling, but at least it allows me to move on. I'm no longer a student. Bah
Also, I'll be heading to a symphony Sunday with Liz, Barbara, and Gloria -- can you believe that? That means I'll be wearing my Darth Vader HEPA mask in a symphony hall! That should get some stares. But if Liz is cool with her date from the dark side, so am I.
Wednesday, September 24, 2008
[9-24-08] A Day in the Life
[12:32pm]
Yesterday, my hemoglobin was at 9.4. Today, who knows? One thing I do know is that I am totally tired and winded. I would boycott moving if I could.
Yesterday, when I got home, I slept, read a little, slept some more, and here I am. Sleep is good.
You know, they say anemia can effect concentration? That could explain a lot. Wait, what was I saying?
Anyhow, I got up this morning with a really weird feeling in my stomach. It was like I needed to eat something, but more dire and weirder feeling. After eating something, and taking my pills, it took an enormous amount of effort to keep everything down. I remember moving very slowly toward my ativan...
I guess I'm a bit more sensitive than I once was... and I'll definitely have to take my pills one at a time in the future.
Then I began my Neupogen injections. It is a very strange feeling to stab oneself. I think it is instinctual...
Well, it seems clear that Cytoxan has kicked my ass the most so far. Beats ICE and Stanford V. Perhaps a taste of what is to come? Now to go back to sleep.
[2:13pm]
After blissful slumber, I awoke with my stomach in knots. This is definitely hunger, but what to eat? I look across the kitchen cabinets and the more I think about food, the more my stomach shifts to nausea. Ok, food later, get a few anti-nausea pills in. The thought of pills makes it worse. My strategy: let an Ativan dissolve in the mouth, then take the other two anti-emetics.
After settling down for a few minutes, I allow my mind to reconsider the possibility of food. Nope... nothing seems to work. Except... my long-time food savior: the bagel. So, I toasted up a bagel with cream cheese and my stomach stopped acting up. I'm going to *live* off these suckers for a while!
Now that my stomach is a little happier, I can work on that 3 liters of water I need to drink today.
Yesterday, my hemoglobin was at 9.4. Today, who knows? One thing I do know is that I am totally tired and winded. I would boycott moving if I could.
Yesterday, when I got home, I slept, read a little, slept some more, and here I am. Sleep is good.
You know, they say anemia can effect concentration? That could explain a lot. Wait, what was I saying?
Anyhow, I got up this morning with a really weird feeling in my stomach. It was like I needed to eat something, but more dire and weirder feeling. After eating something, and taking my pills, it took an enormous amount of effort to keep everything down. I remember moving very slowly toward my ativan...
I guess I'm a bit more sensitive than I once was... and I'll definitely have to take my pills one at a time in the future.
Then I began my Neupogen injections. It is a very strange feeling to stab oneself. I think it is instinctual...
Well, it seems clear that Cytoxan has kicked my ass the most so far. Beats ICE and Stanford V. Perhaps a taste of what is to come? Now to go back to sleep.
[2:13pm]
After blissful slumber, I awoke with my stomach in knots. This is definitely hunger, but what to eat? I look across the kitchen cabinets and the more I think about food, the more my stomach shifts to nausea. Ok, food later, get a few anti-nausea pills in. The thought of pills makes it worse. My strategy: let an Ativan dissolve in the mouth, then take the other two anti-emetics.
After settling down for a few minutes, I allow my mind to reconsider the possibility of food. Nope... nothing seems to work. Except... my long-time food savior: the bagel. So, I toasted up a bagel with cream cheese and my stomach stopped acting up. I'm going to *live* off these suckers for a while!
Now that my stomach is a little happier, I can work on that 3 liters of water I need to drink today.
Monday, September 22, 2008
[9-22-08] Cytoxan Victory! ... Catheter Worries
[11:40am]
You heard it here first, folks: Operation Cytoxan is a go!
Making it here, to this point, has felt like the admissions process into a prestigious university... Like a student waiting for a final exam to be graded, I waited today for my x-ray results. If they are good, I get it. Simple as that. And I got in.
But there was more to it than that, of course. All the tests and exams and appointments to get into the BMT program... they're a part of this too. Since there'd be no Cytoxan unless they actually planned on going through with the BMT.
So, here I am, in the bed, getting hydrated. It's great to put this catheter to use! And the beds here, they are beyond comfortable... I'm talking *space-age* mattresses. If you get up, to reposition yourself, the mattress automatically finds the points on your back with the greatest pressure and "softens" them. Points with the least pressure are "filled." The end result: ultimate comfort.
I'm going to sleep well tonight.
I have a roommate named Nick -- he has Myeloid Leukemia and has already been through the Allogeneic transplant. He's here for other reasons, something about liver problems.
Anyhow, he seems like a cool guy. He's around my age. We just talked about movies, video games, and more video games. Kinda reminds me of T.J.
[12:30pm]
I just got my lab results back:
WBC: 3.6
Neutrophil %: 65.5
Hemoglobin: 9.8!
Hematocrit: 28.3
absolute neutrophil count: 2360 (Not neutropenic)
This impressive thing here is my hemoglobin is at a record low of 9.8! My previous lowest was at 10.8, near the end of Stanford V. At that time, I was exhausted! Climbing up a flight of stairs left me very winded.
So, why then am I feeling pretty energetic? Has my body just gotten used to low oxygen being delivered?
My hematocrit is low as well. At 28.3, I am just 0.3 higher than the value required for a blood transfusion. My nurse tells me I may receive one at the end of the night.
Sheesh! You'd think I have something wrong with me, or something. Blood Transfusion? Bah, I'd be fine without one. Well, maybe not... ::visions self when hemoglobin is at 6:: Maybe it's best to prevent that.
[2:40pm]
Earlier, they performed the following procedures:
1: Drew blood from catheter
2: Hooked catheter to saline IV pump
Now, my nurse comes in with the pre-meds (with 30 mins. to chemo), and she notices that there is no blood return with the catheter. She tries and tries... no blood return. Now she's sending for someone else to check.
I hope they do not have to perform surgery again, and delay chemo further. Chemo: So close, yet so far away. ::worry::
[4:37pm]
Nurse came by and tried again to no avail. Then she tried this thing called TPA that is supposed to remove any blod clots or anything. 30 minutes later...still nothing. Now she's getting a doctor. ::more worry::
[4:53pm]
Nurse just came in and told me that she was going to administer the chemo peripherally; I'm going to get stuck by a needle. Stupid catheter. All this work to clean it and maintain it for nothing. She's scheduling an appointment with radiology surgeons to fix it... says it will probably be non-surgical.
But still: More appointments, more procedures, more stress. At least I'm getting chemo. But now I have to stress about getting this catheter in order so that apheresis isn't delayed. Also, what about the neupogen? I've got to get that by tomorrow, but I don't even know if Walgreens has it yet.
::stress::
[10:57pm]
Chemo is done and I feel great! No nausea or anything. The dose was 8.5g -- a little less than I expected, but still good. My new nurse got the catheter working after asking me to cough a few times. It looks like my catheter will be difficult for the next few months. *sigh* Oh well, at least I got my IV needle out.
Nite!
You heard it here first, folks: Operation Cytoxan is a go!
Making it here, to this point, has felt like the admissions process into a prestigious university... Like a student waiting for a final exam to be graded, I waited today for my x-ray results. If they are good, I get it. Simple as that. And I got in.
But there was more to it than that, of course. All the tests and exams and appointments to get into the BMT program... they're a part of this too. Since there'd be no Cytoxan unless they actually planned on going through with the BMT.
So, here I am, in the bed, getting hydrated. It's great to put this catheter to use! And the beds here, they are beyond comfortable... I'm talking *space-age* mattresses. If you get up, to reposition yourself, the mattress automatically finds the points on your back with the greatest pressure and "softens" them. Points with the least pressure are "filled." The end result: ultimate comfort.
I'm going to sleep well tonight.
I have a roommate named Nick -- he has Myeloid Leukemia and has already been through the Allogeneic transplant. He's here for other reasons, something about liver problems.
Anyhow, he seems like a cool guy. He's around my age. We just talked about movies, video games, and more video games. Kinda reminds me of T.J.
[12:30pm]
I just got my lab results back:
WBC: 3.6
Neutrophil %: 65.5
Hemoglobin: 9.8!
Hematocrit: 28.3
absolute neutrophil count: 2360 (Not neutropenic)
This impressive thing here is my hemoglobin is at a record low of 9.8! My previous lowest was at 10.8, near the end of Stanford V. At that time, I was exhausted! Climbing up a flight of stairs left me very winded.
So, why then am I feeling pretty energetic? Has my body just gotten used to low oxygen being delivered?
My hematocrit is low as well. At 28.3, I am just 0.3 higher than the value required for a blood transfusion. My nurse tells me I may receive one at the end of the night.
Sheesh! You'd think I have something wrong with me, or something. Blood Transfusion? Bah, I'd be fine without one. Well, maybe not... ::visions self when hemoglobin is at 6:: Maybe it's best to prevent that.
[2:40pm]
Earlier, they performed the following procedures:
1: Drew blood from catheter
2: Hooked catheter to saline IV pump
Now, my nurse comes in with the pre-meds (with 30 mins. to chemo), and she notices that there is no blood return with the catheter. She tries and tries... no blood return. Now she's sending for someone else to check.
I hope they do not have to perform surgery again, and delay chemo further. Chemo: So close, yet so far away. ::worry::
[4:37pm]
Nurse came by and tried again to no avail. Then she tried this thing called TPA that is supposed to remove any blod clots or anything. 30 minutes later...still nothing. Now she's getting a doctor. ::more worry::
[4:53pm]
Nurse just came in and told me that she was going to administer the chemo peripherally; I'm going to get stuck by a needle. Stupid catheter. All this work to clean it and maintain it for nothing. She's scheduling an appointment with radiology surgeons to fix it... says it will probably be non-surgical.
But still: More appointments, more procedures, more stress. At least I'm getting chemo. But now I have to stress about getting this catheter in order so that apheresis isn't delayed. Also, what about the neupogen? I've got to get that by tomorrow, but I don't even know if Walgreens has it yet.
::stress::
[10:57pm]
Chemo is done and I feel great! No nausea or anything. The dose was 8.5g -- a little less than I expected, but still good. My new nurse got the catheter working after asking me to cough a few times. It looks like my catheter will be difficult for the next few months. *sigh* Oh well, at least I got my IV needle out.
Nite!
Sunday, September 21, 2008
[9-21-08] 30 Rock
[8:45pm]
I've got nothing. For the past two days, nothing special has happened and I have done nothing productive (besides a little cleaning). Aren't I cool?
I've been spending my time watching 30 Rock and reading a book. Finally, I've gotten into a book! It's hard for me to get started on a new series, but once I do, I usually tear through them. And that's that!
Oh, and the nurse who said to replace the catheter dressing once a week was crazy! I mean, you're wearing this 24 hours a day; I think it's got to be replaced at *least* twice a week. But maybe that's just me: I like being clean.
Tomorrow I get my chest x-ray at 8am (means getting up at 5:30am)... I'm hoping for an x-ray without problems. Hopefully, I will begin chemo tomorrow! (Yes, I will begin chemo tomorrow while being filled with hope. So :P) Fingers Crossed!
I've got nothing. For the past two days, nothing special has happened and I have done nothing productive (besides a little cleaning). Aren't I cool?
I've been spending my time watching 30 Rock and reading a book. Finally, I've gotten into a book! It's hard for me to get started on a new series, but once I do, I usually tear through them. And that's that!
Oh, and the nurse who said to replace the catheter dressing once a week was crazy! I mean, you're wearing this 24 hours a day; I think it's got to be replaced at *least* twice a week. But maybe that's just me: I like being clean.
Tomorrow I get my chest x-ray at 8am (means getting up at 5:30am)... I'm hoping for an x-ray without problems. Hopefully, I will begin chemo tomorrow! (Yes, I will begin chemo tomorrow while being filled with hope. So :P) Fingers Crossed!
Friday, September 19, 2008
[9-19-08] Night Cough = Delayed Chemo?
[10:53pm]
This morning, my Stanford nurse called with a warning: Monday's Cytoxan could be delayed further if I continued to have an irregular chest x-ray.
With a night cough that has lasted for over a week despite antibiotics, I am growing increasingly concerned that there might actually be a troubling new diagnosis ahead. Even if there isn't, it doesn't seem to be going away, and I don't like the possibility of delaying chemo further. I understand the implications of reducing chemo-intensity and I don't like it.
Fighting cancer is such a stressful occupation. Sometimes I wish I didn't have to call nurses, schedule appointments, wait for return calls, and panic about impending test results. It would be nice to just chill. Or maybe work full-time -- a forced distraction would be nice... video games and the internet can only encompass so much time... responsibility creeps in.
Anyhow, I'm still isolated on the boat. It's going to be a big project getting this place prepared for post-cytoxan. Still, I can't delay the chemo even further due to illness -- that'd be devastating. Liz has a fever this weekend, so I can't see her either. I'm really bummed about that -- I was really looking forward to seeing her. Damn cancer.
Bah.
As for the catheter, it is really creepy injecting Heparin into a tube leading directly into your heart. Really freaky. You don't want any air bubbles! And don't forget to clamp the tube shut! The prospect of me forgetting something like that...
Well, at least I'm getting used to it.
This morning, my Stanford nurse called with a warning: Monday's Cytoxan could be delayed further if I continued to have an irregular chest x-ray.
With a night cough that has lasted for over a week despite antibiotics, I am growing increasingly concerned that there might actually be a troubling new diagnosis ahead. Even if there isn't, it doesn't seem to be going away, and I don't like the possibility of delaying chemo further. I understand the implications of reducing chemo-intensity and I don't like it.
Fighting cancer is such a stressful occupation. Sometimes I wish I didn't have to call nurses, schedule appointments, wait for return calls, and panic about impending test results. It would be nice to just chill. Or maybe work full-time -- a forced distraction would be nice... video games and the internet can only encompass so much time... responsibility creeps in.
Anyhow, I'm still isolated on the boat. It's going to be a big project getting this place prepared for post-cytoxan. Still, I can't delay the chemo even further due to illness -- that'd be devastating. Liz has a fever this weekend, so I can't see her either. I'm really bummed about that -- I was really looking forward to seeing her. Damn cancer.
Bah.
As for the catheter, it is really creepy injecting Heparin into a tube leading directly into your heart. Really freaky. You don't want any air bubbles! And don't forget to clamp the tube shut! The prospect of me forgetting something like that...
Well, at least I'm getting used to it.
Thursday, September 18, 2008
[9-18-08] Hickman Catheter Placement #2
[11:29am]
It was quite a different experience to have a procedure done in a teaching hospital. Still, it wasn't like what you'd expect to see in an episode of "Scrubs" or "House." There weren't a bunch of bumbling interns, and residents too busy dating one another to worry about the patients. It was actually quite serious there.
However, that doesn't mean that everything went perfectly. My nurse had trouble putting the IV into my right hand, so she asked for help. It was quite disconcerting to have another nurse demonstrate the proper method while I sit there quietly. At one point, it went something like this: "Feel this vein? Like this. Still don't? Ok, try this. Here, feel right here. No? Ok, well you can at least see it, right?" Quite disconcerting.
Then there is the surgery itself. After having myriad medical procedures performed on myself, I believe that I am somewhat capable of evaluating them. Let me say this: Stanford may be the world's best place to be for a lymphoma BMT, but consider getting your catheter placed elsewhere. Okay, that's not a totally fair assessment. First, it looks like the catheter was placed just fine. Second, I can't judge an institution based on a single doctor.
My problem was that the procedure itself was painful. I had to constantly nag the doctor that what he was doing was painful. At first, he was receptive, but eventually I got the impression that he started to find my complaints annoying. Either that, or he believed that there was no possible way I could be feeling any pain with the amount of Fentanyl that he had administered; that I may have been faking pain to get more pain medication or something.
A couple of things he said before the procedure:
1: The only pain you will feel is from the lidocaine injections (local anesthetic).
2: You'll probably forget the whole thing.
Both were terribly wrong... I remember the whole procedure. I really think they didn't expect me to. At one point, I heard the doctor complain that my vein was being "stubborn." At another point, after I had complained, I recall the doctor telling the nurse to give me "the rest of the Versed", and that they "might as well not waste it." I'm not quite sure what this means (I had a blue sheet blocking my vision), but perhaps I am allocated a fixed amount of medication for a procedure? As far as I know, Versed is what makes you forget the procedure -- the Fentanyl is for pain. Anyhow, it's over now. Still, my point is that I remember my other two procedures (one, a port placement) with conscious sedation -- I hardly felt any pain at all. So why the pain this time?
After the procedure, Barbara and I headed to the ENT appointment. She stuck this long tube with a camera attached to it... through my nose and down my throat. I loved how, before the procedure, she commented, "You've been subjected to so much, that this'll be a piece of cake for you." She was right; it was.
Anyhow, she concluded that I was fine. So, good news there.
The bad news is that, due to my cough, everything in my BMT schedule has been delayed a week. I should be enjoying a Cytoxan martini right now, but that's been delayed until Monday... which causes a delay in everything else by a full week. So, no outpatient conditioning chemo until Oct. 21st.
Oh well. I've got a busy schedule! I'm just about to head to an appointment with a local oncologist (so that I can get labs in Santa Cruz). But first, I have to figure out how to work this darn catheter. I want a shower!
It was quite a different experience to have a procedure done in a teaching hospital. Still, it wasn't like what you'd expect to see in an episode of "Scrubs" or "House." There weren't a bunch of bumbling interns, and residents too busy dating one another to worry about the patients. It was actually quite serious there.
However, that doesn't mean that everything went perfectly. My nurse had trouble putting the IV into my right hand, so she asked for help. It was quite disconcerting to have another nurse demonstrate the proper method while I sit there quietly. At one point, it went something like this: "Feel this vein? Like this. Still don't? Ok, try this. Here, feel right here. No? Ok, well you can at least see it, right?" Quite disconcerting.
Then there is the surgery itself. After having myriad medical procedures performed on myself, I believe that I am somewhat capable of evaluating them. Let me say this: Stanford may be the world's best place to be for a lymphoma BMT, but consider getting your catheter placed elsewhere. Okay, that's not a totally fair assessment. First, it looks like the catheter was placed just fine. Second, I can't judge an institution based on a single doctor.
My problem was that the procedure itself was painful. I had to constantly nag the doctor that what he was doing was painful. At first, he was receptive, but eventually I got the impression that he started to find my complaints annoying. Either that, or he believed that there was no possible way I could be feeling any pain with the amount of Fentanyl that he had administered; that I may have been faking pain to get more pain medication or something.
A couple of things he said before the procedure:
1: The only pain you will feel is from the lidocaine injections (local anesthetic).
2: You'll probably forget the whole thing.
Both were terribly wrong... I remember the whole procedure. I really think they didn't expect me to. At one point, I heard the doctor complain that my vein was being "stubborn." At another point, after I had complained, I recall the doctor telling the nurse to give me "the rest of the Versed", and that they "might as well not waste it." I'm not quite sure what this means (I had a blue sheet blocking my vision), but perhaps I am allocated a fixed amount of medication for a procedure? As far as I know, Versed is what makes you forget the procedure -- the Fentanyl is for pain. Anyhow, it's over now. Still, my point is that I remember my other two procedures (one, a port placement) with conscious sedation -- I hardly felt any pain at all. So why the pain this time?
After the procedure, Barbara and I headed to the ENT appointment. She stuck this long tube with a camera attached to it... through my nose and down my throat. I loved how, before the procedure, she commented, "You've been subjected to so much, that this'll be a piece of cake for you." She was right; it was.
Anyhow, she concluded that I was fine. So, good news there.
The bad news is that, due to my cough, everything in my BMT schedule has been delayed a week. I should be enjoying a Cytoxan martini right now, but that's been delayed until Monday... which causes a delay in everything else by a full week. So, no outpatient conditioning chemo until Oct. 21st.
Oh well. I've got a busy schedule! I'm just about to head to an appointment with a local oncologist (so that I can get labs in Santa Cruz). But first, I have to figure out how to work this darn catheter. I want a shower!
Wednesday, September 17, 2008
[9-17-08] Hickman Catheter Placement
[6:13pm]
I just got back from my Hickman catheter placement -- what a long day! Everything has gone pretty well; all tubes have been upgraded successfully. Also, the ENT doctor says everything is fine. But I'm totally exhausted now (we got up at 3:40am), so I'll write more later. Now is time for sleep.
I just got back from my Hickman catheter placement -- what a long day! Everything has gone pretty well; all tubes have been upgraded successfully. Also, the ENT doctor says everything is fine. But I'm totally exhausted now (we got up at 3:40am), so I'll write more later. Now is time for sleep.
Tuesday, September 16, 2008
[9-16-08] Pleural Effusion
[11:07am]
My doctor from Stanford just called... I've learned that a direct call from a doctor is never a good thing. At least, not with cancer. My chest x-ray indicated a fluid build-up around my left lung -- a pleural effusion. This fluid build-up is especially vulnerable to infection, which is exactly what my doctor believed has happened. From what I gather, with an effusion, the fact that I start coughing whenever I lie down means that infection is quite likely.
My doctor wants to start me on 5-day antibiotics. This means delaying the chemo. Hopefully, Cytoxan will begin early next week. Hopefully, this wont effect my BMT schedule too adversely. Hopefully, I will learn to use the word "hopefully" correctly.
See, technically, my first comment means: "Cytoxan will begin early next week with a hopeful demeanor." Or, "I will learn to use the word 'hopefully' with a hopeful demeanor." What everyone is used to is actually incorrect usage. But, oh well, everyone does it -- that mean it is OK in the English language.
Sorry, my mind wanders when I am upset. Oh well, at least the treatment should get me a good night's sleep. That would be great.
My doctor from Stanford just called... I've learned that a direct call from a doctor is never a good thing. At least, not with cancer. My chest x-ray indicated a fluid build-up around my left lung -- a pleural effusion. This fluid build-up is especially vulnerable to infection, which is exactly what my doctor believed has happened. From what I gather, with an effusion, the fact that I start coughing whenever I lie down means that infection is quite likely.
My doctor wants to start me on 5-day antibiotics. This means delaying the chemo. Hopefully, Cytoxan will begin early next week. Hopefully, this wont effect my BMT schedule too adversely. Hopefully, I will learn to use the word "hopefully" correctly.
See, technically, my first comment means: "Cytoxan will begin early next week with a hopeful demeanor." Or, "I will learn to use the word 'hopefully' with a hopeful demeanor." What everyone is used to is actually incorrect usage. But, oh well, everyone does it -- that mean it is OK in the English language.
Sorry, my mind wanders when I am upset. Oh well, at least the treatment should get me a good night's sleep. That would be great.
Monday, September 15, 2008
[9-15-08] My First Labs at Stanford
[11:57pm]
It has been a long day. I think that's how things are when it comes to these Stanford visits. Let's see... what did I expect? I wrote:
Arrival at Stanford: The Infusion Room
In case you are wondering, ITA stands for "Infusion Treatment Area." I believe that's where I'll get my outpatient infusions, but, for today, that is where I will have my labs drawn. In addition to that, I'll have an EKG and a chest x-ray performed.
After my name was called, I left the waiting room and had my identity verified by the nurse.
"Would you like a bed or a chair?", she asked.
I was kind-of taken aback. A bed... for labs?!? Sit me on a milk crate, or whatever -- labs only take 10 minutes or so! But I wasn't about to be taken by surprise... I didn't get much sleep last night and if I had to wait long, I would rather take a bed a catch some z's. "Well, how long will this all take?"
"Oh, you're just getting labs. It wont be long."
So I ask for a chair and get taken into the infusion area.
It's not like at the cancer center in Berkeley. Instead of individual rooms, there are about 8 comfy recliners facing the center of the rooms. There are a lot of people wearing HEPA masks in here. We take a seat, and wait.
I play my DS, and wait, and wait, and wait. Almost two hours have passed and I still haven't seen my nurse! Barbara and I leave the infusion area, but I decide to inform as nurse anyways. Basically, I said, "I was supposed to get labs drawn at 9:30am (time was 11:20am), but I'm already late for the oncology appointment and I haven't even been seen yet. We've got to go." The nurse told us to wait a few more minutes, and made a few calls. Meanwhile, Barbara scrambled to the downstairs clinic to ensure that all appointments would not be lost due to a labwork delay.
The guy sitting next to me was a doctor. He was calling his patients, informing them that he would make appointments as-planned. I thought it was kinda trippy for a doctor to be sitting here with me, as a patient. Maybe that is silly, but still... kinda trippy.
The Oncology Appointment
The meeting with my doctor was pretty straightforward. First, she reviewed my latest Pet/CT scan. "Your scan was fine," she said. In addition, she noted that certain parts of the scan seemed to indicate that there was still some chemo activity. Meaning that certain parts of the scan were "brighter" because the chemo was still working while the scan was being performed. This means that my results are likely better than indicated.
Barbara asked if it was possible that my third ICE treatment got rid of all the cancer. "Sure," she said.
thinking about ICE, I inquired about the possible 4th ICE treatment. Apparently, my local oncologist misheard -- after my second scan, she never planned a 4th.
Next, she inquired about my health. So I told her all about the coughing and the throat (better, now) and whatnot. The throat soreness didn't phase her a bit, but the coughing, apparently, was cause for concern. If there was a viral infection, this could mean a delay in the treatment. A delay is no good. Still, she has to know... so she ordered a "nasal swab."
Later, when the scheduling nurse arrived, she systematically laid out the tools to perform the swab. She said, in her bone-marrow-biopsy-tone, "*sigh* As you know, I have to perform a nasal swap. It's a bit uncomfortable." At this point, I'm imagining her sticking a corkscrew up my nose... my mind is trying to imaging biopsy-level pain in the nasal region... not good.
Still, maybe I'm over-reacting. Hey! I've never had one of these done before! If a procedure is bad, then the nurses under-report the amount of pain. Otherwise, it's just-the-facts. Realizing this, I start to feel better. I even tell the nurse, "Hey, I haven't had one of these before. That means I have no idea what it's like... For all I know, the swab is fun!"
She looks at me for a moment. "I'm just so excited to give you this nasal swab", she says. "I can't wait!"
The "nasal swab" was a piece of cake -- just made me sneeze a bit. Probably something like snorting pepper. Anyhow, after the procedure, I say, "I wish I had three nostrils!"
"It's ok, I could just do it all again if you like."
Sensing the attack on my established delusion, I offer up one final attack: "Oh, I wouldn't want you to have to go through all the trouble of getting new tools. I'm happy as-is."
She nods... Victory!!! :P
She then talked a bit about Cytoxan, and how I needed to drink 3 liters of water when I was not in the hospital. She asked me whether I was good at drinking that amount of fluid, I said "Yes, when I need to."
Then Barbara said, "But not beer, of course."
*sigh*
I then get a quick lecture on alcohol. Bah. What was cool was that she said, "I've couldn't possibly imagine anyone even remotely wanting alcohol after Cytoxan!" O RLY? Is that a challenge? :P Just kidding.. I promised to drink no beer once BMT was underway.
Then, she hands us a whole heap of prescription orders and we run to the cafeteria for a quick bite to eat.
Catheter Maintenance and Self-Injection Class
Drives me nuts how they call this a class. They should call it a tutorial. Classes have students, plural. Bah. I even asked the nurse; they only give about 5 of these "classes" a week. I'll bet ya that they all had only one cancer patient attending.
ok.... let's try that again...
Catheter Maintenance and Self-Injection Tutorial
That's better.
So it starts with a video. I secretly wish to myself to see Troy Maclure (Simpsons) introducing "So, you've got a new catheter." It looks like a lot of work. And I can't go swimming, or have showers (without taping a bag over the catheter) -- I love showers! Bah. Oh well.
Then the nurse brings out a bunch of materials. It looks like we're going to re-enact the tutorial. Great, I learn the best this way anyways. She brings out a rubber torso of a female with a catheter installed and says, "This is how it will look."
I paused for a moment... "I certainly hope not!", I said. The nurse probably heard that a hundred times, but I couldn't resist. :P
Then we're presented with a video and demonstration on self-injection. Kinda funny how the lady narrating the video looks totally stoned -- like she's "self-injected" quite a bit herself.
The Pharmacy
We got tons of pills! Stanford wants Barbara to bring all my prescriptions to the hospital when I get discharged after Cytoxan. That's such a good idea!!! I remember getting out of my first ICE treatment, and having to scramble to get some Ativan. No chance of blowing chunks at the local pharmacy this time!
Still waiting on the authorization for the Neupogen. Apparently, my prescription for Neupogen (for two weeks) costs about 15 grand. Ouch!
It has been a long day. I think that's how things are when it comes to these Stanford visits. Let's see... what did I expect? I wrote:
(9:30) To the ITA for labs, cxr, ekg. (11am) To Clinic E to
meet with Doctor. (2:00pm) To the ITA for catheter and self-injection class.
Arrival at Stanford: The Infusion Room
In case you are wondering, ITA stands for "Infusion Treatment Area." I believe that's where I'll get my outpatient infusions, but, for today, that is where I will have my labs drawn. In addition to that, I'll have an EKG and a chest x-ray performed.
After my name was called, I left the waiting room and had my identity verified by the nurse.
"Would you like a bed or a chair?", she asked.
I was kind-of taken aback. A bed... for labs?!? Sit me on a milk crate, or whatever -- labs only take 10 minutes or so! But I wasn't about to be taken by surprise... I didn't get much sleep last night and if I had to wait long, I would rather take a bed a catch some z's. "Well, how long will this all take?"
"Oh, you're just getting labs. It wont be long."
So I ask for a chair and get taken into the infusion area.
It's not like at the cancer center in Berkeley. Instead of individual rooms, there are about 8 comfy recliners facing the center of the rooms. There are a lot of people wearing HEPA masks in here. We take a seat, and wait.
I play my DS, and wait, and wait, and wait. Almost two hours have passed and I still haven't seen my nurse! Barbara and I leave the infusion area, but I decide to inform as nurse anyways. Basically, I said, "I was supposed to get labs drawn at 9:30am (time was 11:20am), but I'm already late for the oncology appointment and I haven't even been seen yet. We've got to go." The nurse told us to wait a few more minutes, and made a few calls. Meanwhile, Barbara scrambled to the downstairs clinic to ensure that all appointments would not be lost due to a labwork delay.
The guy sitting next to me was a doctor. He was calling his patients, informing them that he would make appointments as-planned. I thought it was kinda trippy for a doctor to be sitting here with me, as a patient. Maybe that is silly, but still... kinda trippy.
The Oncology Appointment
The meeting with my doctor was pretty straightforward. First, she reviewed my latest Pet/CT scan. "Your scan was fine," she said. In addition, she noted that certain parts of the scan seemed to indicate that there was still some chemo activity. Meaning that certain parts of the scan were "brighter" because the chemo was still working while the scan was being performed. This means that my results are likely better than indicated.
Barbara asked if it was possible that my third ICE treatment got rid of all the cancer. "Sure," she said.
thinking about ICE, I inquired about the possible 4th ICE treatment. Apparently, my local oncologist misheard -- after my second scan, she never planned a 4th.
Next, she inquired about my health. So I told her all about the coughing and the throat (better, now) and whatnot. The throat soreness didn't phase her a bit, but the coughing, apparently, was cause for concern. If there was a viral infection, this could mean a delay in the treatment. A delay is no good. Still, she has to know... so she ordered a "nasal swab."
Later, when the scheduling nurse arrived, she systematically laid out the tools to perform the swab. She said, in her bone-marrow-biopsy-tone, "*sigh* As you know, I have to perform a nasal swap. It's a bit uncomfortable." At this point, I'm imagining her sticking a corkscrew up my nose... my mind is trying to imaging biopsy-level pain in the nasal region... not good.
Still, maybe I'm over-reacting. Hey! I've never had one of these done before! If a procedure is bad, then the nurses under-report the amount of pain. Otherwise, it's just-the-facts. Realizing this, I start to feel better. I even tell the nurse, "Hey, I haven't had one of these before. That means I have no idea what it's like... For all I know, the swab is fun!"
She looks at me for a moment. "I'm just so excited to give you this nasal swab", she says. "I can't wait!"
The "nasal swab" was a piece of cake -- just made me sneeze a bit. Probably something like snorting pepper. Anyhow, after the procedure, I say, "I wish I had three nostrils!"
"It's ok, I could just do it all again if you like."
Sensing the attack on my established delusion, I offer up one final attack: "Oh, I wouldn't want you to have to go through all the trouble of getting new tools. I'm happy as-is."
She nods... Victory!!! :P
She then talked a bit about Cytoxan, and how I needed to drink 3 liters of water when I was not in the hospital. She asked me whether I was good at drinking that amount of fluid, I said "Yes, when I need to."
Then Barbara said, "But not beer, of course."
*sigh*
I then get a quick lecture on alcohol. Bah. What was cool was that she said, "I've couldn't possibly imagine anyone even remotely wanting alcohol after Cytoxan!" O RLY? Is that a challenge? :P Just kidding.. I promised to drink no beer once BMT was underway.
Then, she hands us a whole heap of prescription orders and we run to the cafeteria for a quick bite to eat.
Catheter Maintenance and Self-Injection Class
Drives me nuts how they call this a class. They should call it a tutorial. Classes have students, plural. Bah. I even asked the nurse; they only give about 5 of these "classes" a week. I'll bet ya that they all had only one cancer patient attending.
ok.... let's try that again...
Catheter Maintenance and Self-Injection Tutorial
That's better.
So it starts with a video. I secretly wish to myself to see Troy Maclure (Simpsons) introducing "So, you've got a new catheter." It looks like a lot of work. And I can't go swimming, or have showers (without taping a bag over the catheter) -- I love showers! Bah. Oh well.
Then the nurse brings out a bunch of materials. It looks like we're going to re-enact the tutorial. Great, I learn the best this way anyways. She brings out a rubber torso of a female with a catheter installed and says, "This is how it will look."
I paused for a moment... "I certainly hope not!", I said. The nurse probably heard that a hundred times, but I couldn't resist. :P
Then we're presented with a video and demonstration on self-injection. Kinda funny how the lady narrating the video looks totally stoned -- like she's "self-injected" quite a bit herself.
The Pharmacy
We got tons of pills! Stanford wants Barbara to bring all my prescriptions to the hospital when I get discharged after Cytoxan. That's such a good idea!!! I remember getting out of my first ICE treatment, and having to scramble to get some Ativan. No chance of blowing chunks at the local pharmacy this time!
Still waiting on the authorization for the Neupogen. Apparently, my prescription for Neupogen (for two weeks) costs about 15 grand. Ouch!
Sunday, September 14, 2008
[9-14-08] The Infamous Chemo-Fart
[7:10pm]
For some reason, I haven't seen it on any list of side-effects. I haven't read about it online, or in other blogs... but I know it exists.
There was this one blog... where a nurse conspicuously asked the blogger, "How are you farting?"
I believe this is because the chemotherapy damages the gastrointestinal tract, causing some food to remain partially undigested. This causes excess gas.
It is difficult to admit, but I have experienced this as well. In fact, I noticed it as soon as the second month of Stanford V. It's not just a few extra "toots" here and there... I'm talking cancel-a-date-so-I-can-go-home-and-fart-all-evening type fart. Holding it in can be quite uncomfortable... especially without reprieve for hours.
Eventually, one afflicted with the dreaded Chemo-Fart learns to adjust. You may notice them "going to the bathroom" quite often, without flushing. Outside, they may occasionally walk quite a good distance from you, or even disappear for moments entirely. This is normal.
Anyhow, the reason I bring this up is twofold:
1> No one ever talks about it
2> I'm about to begin BMT
Basically, during the crummy parts of my inpatient stuff, I imagine I'm not going to relish the idea of unplugging the IV-Pole and hiding in the bathroom to fart. I'm probably going to be sick and miserable, and holding in farts isn't going to help me feel better. So, in the form of a public service announcement, Days -4 to 14 are "fart without guilt days."
People visiting me are welcome to clothespin their nose (though chemo-farts seem to be with little odor), or I can issue a verbal warning, such as "pull my finger." :P
Oh, boy. I mentioned this to Dan a while back, and he makes it a point of farting in myself and others, and saying something loud like, "Whoaaa! Those Chemo-Farts sure pack a wallop, Austin."
*ahem*
On another note, tomorrow starts the first day of Stanford BMT week! It begins with an appointment with my doctor!
For some reason, I haven't seen it on any list of side-effects. I haven't read about it online, or in other blogs... but I know it exists.
There was this one blog... where a nurse conspicuously asked the blogger, "How are you farting?"
I believe this is because the chemotherapy damages the gastrointestinal tract, causing some food to remain partially undigested. This causes excess gas.
It is difficult to admit, but I have experienced this as well. In fact, I noticed it as soon as the second month of Stanford V. It's not just a few extra "toots" here and there... I'm talking cancel-a-date-so-I-can-go-home-and-fart-all-evening type fart. Holding it in can be quite uncomfortable... especially without reprieve for hours.
Eventually, one afflicted with the dreaded Chemo-Fart learns to adjust. You may notice them "going to the bathroom" quite often, without flushing. Outside, they may occasionally walk quite a good distance from you, or even disappear for moments entirely. This is normal.
Anyhow, the reason I bring this up is twofold:
1> No one ever talks about it
2> I'm about to begin BMT
Basically, during the crummy parts of my inpatient stuff, I imagine I'm not going to relish the idea of unplugging the IV-Pole and hiding in the bathroom to fart. I'm probably going to be sick and miserable, and holding in farts isn't going to help me feel better. So, in the form of a public service announcement, Days -4 to 14 are "fart without guilt days."
People visiting me are welcome to clothespin their nose (though chemo-farts seem to be with little odor), or I can issue a verbal warning, such as "pull my finger." :P
Oh, boy. I mentioned this to Dan a while back, and he makes it a point of farting in myself and others, and saying something loud like, "Whoaaa! Those Chemo-Farts sure pack a wallop, Austin."
*ahem*
On another note, tomorrow starts the first day of Stanford BMT week! It begins with an appointment with my doctor!
Friday, September 12, 2008
[9-12-08] I Don't Have Cancer...
[4:56pm]
I'm sorry to admit, but this has all been a charade. I don't actually have cancer. All of this has been a drastic attempt for attention.
Remember those visits to the cancer center? Well, I just walked in and snuck out the back when no one was with me. I watched a lot of movies at the theater during my so-called "Stanford V" regimen.
I faked everything: the nausea, the hair loss, the fatigue, even the port-a-cath. It was all handled by some fancy make-up, good acting, and a lot of shaving.
As for the surgeries and hospitalizations, the answer was good old-fashioned bribery. The nurses were acting all along. The scary-looking bags of chemo were actually saline. Lots and lots of saline -- that's all I got during my ICE treatments. The pills were all either acetaminophen or sugar.
The surgeries? The surgeons were a bit more expensive to bribe, but they came around... and were happy to have a lighter workload. During my "procedure," the nurses and I usually sat around the surgical table playing Go-Fish until my time was up. Er.... ok, that's taking it a bit far.
Hmm...
How about: Conspiracy Theory
They're all in on it. The doctors, nurses, specialists... they're all in on it.
The itching I've had over the past three years? A simple irritant added to my laundry detergent. What about occasionally being able to feel my "tumor?" Interesting how that began only after your invasive biopsy. Ever wonder why your surgical scar seems unnecessarily large? They installed some sort of surgical plastic during the procedure.
Everything else can be explained by forging medical reports. How does one know that the x-ray or CT scan is really theirs? I'm not taking the pictures myself -- how do I *really* know?
As for the chemo -- it did'nt actually contain chemotherapy agents. Instead, a small amount of nausea-producing chemicals are added to saline. Same thing for the hair loss, and other side-effects.
So why would they do this?
It's a type of generalized immunotherapy. An extremely small percentage of the population are immune to cancer. Well, not exactly -- they can still *get* cancer, but once they become aware of it, their body fights it off.
Many attempts have been made to extract these cells and use them to create a cure. Unfortunately, once the cancer is present, the cells become polarized to that particular host and their type of cancer. The cells are ineffectual in another body. If a person with the right genetic make-up is found and they do not have cancer, then none of these cells are present.
Somehow, these cells become activated only if the host truly believes that they have cancer. So, in order to create a cure, the researchers must find a person with the right genetics who also truly believes that they have cancer.
Years of studies were conducted. In the traditional manner, participants in these studies signed consent forms indicating the nature of the experiments... in a nutshell, that they may be "lied to." Accordingly, when healthy participants were told that they had cancer, they were somewhat suspicious. As a result, no useful results were obtained. After years of these studies, the researchers involved concluded that there was no ethical way to find this cure.
Hence, myself, and their non-ethical methods. But I'm on to them, I *know* I don't have cancer... which in a way, is sad. On one hand, I don't have cancer. On the other, I do have cancer (or at least think I do), but can be useful for cancer research.
Ok, enough science fiction. Everything above this, in this post, is completely false. They are just daydreams... fantasies that swim across my consciousness when I'm dealing with something especially hard.
It's amazing how far your mind will wander when you let it. :P
As for reality... Last night was an absolutely terrible night. My nighttime cough, usually resolved by a few gulps of numbing mouthwash, would just not go away. So I just coughed for hours and hours and hours, occasionally drifting momentarily into slumber... to be harshly awakened my more coughing.
The weird part is that I don't cough during the day. I'm not coughing now, but I coughed at a rate of about 1 per minute last night.
Wherefore art thou enteroscopinologist? :P
I'm sorry to admit, but this has all been a charade. I don't actually have cancer. All of this has been a drastic attempt for attention.
Remember those visits to the cancer center? Well, I just walked in and snuck out the back when no one was with me. I watched a lot of movies at the theater during my so-called "Stanford V" regimen.
I faked everything: the nausea, the hair loss, the fatigue, even the port-a-cath. It was all handled by some fancy make-up, good acting, and a lot of shaving.
As for the surgeries and hospitalizations, the answer was good old-fashioned bribery. The nurses were acting all along. The scary-looking bags of chemo were actually saline. Lots and lots of saline -- that's all I got during my ICE treatments. The pills were all either acetaminophen or sugar.
The surgeries? The surgeons were a bit more expensive to bribe, but they came around... and were happy to have a lighter workload. During my "procedure," the nurses and I usually sat around the surgical table playing Go-Fish until my time was up. Er.... ok, that's taking it a bit far.
Hmm...
How about: Conspiracy Theory
They're all in on it. The doctors, nurses, specialists... they're all in on it.
The itching I've had over the past three years? A simple irritant added to my laundry detergent. What about occasionally being able to feel my "tumor?" Interesting how that began only after your invasive biopsy. Ever wonder why your surgical scar seems unnecessarily large? They installed some sort of surgical plastic during the procedure.
Everything else can be explained by forging medical reports. How does one know that the x-ray or CT scan is really theirs? I'm not taking the pictures myself -- how do I *really* know?
As for the chemo -- it did'nt actually contain chemotherapy agents. Instead, a small amount of nausea-producing chemicals are added to saline. Same thing for the hair loss, and other side-effects.
So why would they do this?
It's a type of generalized immunotherapy. An extremely small percentage of the population are immune to cancer. Well, not exactly -- they can still *get* cancer, but once they become aware of it, their body fights it off.
Many attempts have been made to extract these cells and use them to create a cure. Unfortunately, once the cancer is present, the cells become polarized to that particular host and their type of cancer. The cells are ineffectual in another body. If a person with the right genetic make-up is found and they do not have cancer, then none of these cells are present.
Somehow, these cells become activated only if the host truly believes that they have cancer. So, in order to create a cure, the researchers must find a person with the right genetics who also truly believes that they have cancer.
Years of studies were conducted. In the traditional manner, participants in these studies signed consent forms indicating the nature of the experiments... in a nutshell, that they may be "lied to." Accordingly, when healthy participants were told that they had cancer, they were somewhat suspicious. As a result, no useful results were obtained. After years of these studies, the researchers involved concluded that there was no ethical way to find this cure.
Hence, myself, and their non-ethical methods. But I'm on to them, I *know* I don't have cancer... which in a way, is sad. On one hand, I don't have cancer. On the other, I do have cancer (or at least think I do), but can be useful for cancer research.
Ok, enough science fiction. Everything above this, in this post, is completely false. They are just daydreams... fantasies that swim across my consciousness when I'm dealing with something especially hard.
It's amazing how far your mind will wander when you let it. :P
As for reality... Last night was an absolutely terrible night. My nighttime cough, usually resolved by a few gulps of numbing mouthwash, would just not go away. So I just coughed for hours and hours and hours, occasionally drifting momentarily into slumber... to be harshly awakened my more coughing.
The weird part is that I don't cough during the day. I'm not coughing now, but I coughed at a rate of about 1 per minute last night.
Wherefore art thou enteroscopinologist? :P
Wednesday, September 10, 2008
[9-10-08] ENT
[3:03pm]
I always thought ENT stood for some really long and obscure medical speciality...like Enteroscopinology. I just figured it out: Ear, Nose, and Throat. Duh!
Anyhow, my throat is still driving me crazy. The worst part is the coughing at night. For some reason (i.e. some deity playing a cruel prank on me), whenever I lie down to begin my blissful drift into slumber, I start coughing. It occurs because I lie down to go to sleep -- isn't that vicious?
Another cruelty: my only cure to the coughing is the numbing mouthwash. I have to take two full gulps to start the cough. So what's the problem? That stuff makes me feel sick! It takes effort to hold down the two gulps. So I have the pain/coughing on one side, and nausea on the other. I have to choose the lesser of two evils. Sometimes the treatment is worse than the disease. :P Sometimes not.
Yesterday, I promised to call the nurse if the problem persisted the next day. So I called her today. She studied my symptoms, discussed them with my doctor, and got back to me. The diagnosis: a referral to an ENT doctor is needed. She strongly wishes this to be resolved before I begin BMT chemo.
So, I've been scrambling all day to make an appointment with an ENT doctor. It is very hard to schedule around the BMT schedule... especially if I need a ride from someone to do so. Bah.
I always thought ENT stood for some really long and obscure medical speciality...like Enteroscopinology. I just figured it out: Ear, Nose, and Throat. Duh!
Anyhow, my throat is still driving me crazy. The worst part is the coughing at night. For some reason (i.e. some deity playing a cruel prank on me), whenever I lie down to begin my blissful drift into slumber, I start coughing. It occurs because I lie down to go to sleep -- isn't that vicious?
Another cruelty: my only cure to the coughing is the numbing mouthwash. I have to take two full gulps to start the cough. So what's the problem? That stuff makes me feel sick! It takes effort to hold down the two gulps. So I have the pain/coughing on one side, and nausea on the other. I have to choose the lesser of two evils. Sometimes the treatment is worse than the disease. :P Sometimes not.
Yesterday, I promised to call the nurse if the problem persisted the next day. So I called her today. She studied my symptoms, discussed them with my doctor, and got back to me. The diagnosis: a referral to an ENT doctor is needed. She strongly wishes this to be resolved before I begin BMT chemo.
So, I've been scrambling all day to make an appointment with an ENT doctor. It is very hard to schedule around the BMT schedule... especially if I need a ride from someone to do so. Bah.
[9-10-08] BMT Calendar
[10:12am]
Finally! My BMT calendar has been drafted! So, without further ado, here it is:
September
15th: (9:30) To the ITA for labs, cxr, ekg. (11am) To Clinic E to meet with Doctor. (2:00pm) To the ITA for catheter and self-injection class.
16th: (2:30pm) Teaching for transplant class (bring caregiver). ***Nothing to eat or drink after midnight.***
17th: (?:??) Catheter placement.
18th: (9:00am) To unit E1 overnight for Cytoxan. Admit
19th: Discharge home with caregiver. Begin Neupogen and Antibiotics.
20-23rd: Neupogen at home.
24-28th: Neupogen at home. Visit Stanford daily for labs.
29th: Apheresis. May take 1-5 days.
October
10th: (2pm) To Clinic E for labs, cxr, ekg. (3pm) To Clinic to meet with Doctor.
14th: (10:00am) Begin Continuous IV heparin. Administer Gemcitabine, Navelbine on outpatient basis.
15th: My birthday!
19th: (10:00am) 10:00 Administer Gemcitabine, Navelbine on outpatient basis.
21st: (9:00am) Admit to BMT ward. Administer BCNU.
23rd: VP-16
25th: Cytoxan
26th: Sister's due date.
27th: Transplant!
28th: Recover for next 2-3 weeks.
That's it so far! The calendar is a bit sparse at places, but at least I know when everything is going down. Worrying about when everything is going to take place is the worst! So, even if it's not as aggressive as I'd like, at least I don't have to worry.
Speaking of which, I was thinking about something. Sometimes, I think this whole BMT process is geared toward 80 year olds. All the precautions and "mandatory caregiver" stuff... seems a bit excessive at times. Sure, the infection guidelines I can agree with. But, I can certainly inject myself with Neupogen after a wee dose of Cytoxan, and I'd like to think I can maintain my catheter throughout. Also, their estimates for recovery times seem quite high. Makes me think their system isn't geared for the young.
Then again, maybe I'm just weird. I do tolerate chemo pretty darn well.
For example, when Dan and I were visiting one of the nurses at Stanford... Her role was to explain, again, just what was going to happen in the following months. At one point, the conversation went something like this:
Nurse: "...and you'll have to wear the HEPA mask whenever you are outdoors. This is because of all the dust and dirt that you would kick up when you are outside. You should try to stay away from the dust."
Dan: "What about concrete?"
Nurse: "Yes, I would much rather Austin walk on a concrete path than a dirt path."
Dan: "No, I mean concrete dust. Like the kind found in construction, when you're mixing 'crete."
Nurse: **pause**
Austin: "That should be okay, right? Because the bacteria found in natural dirt isn't in commercial products, right?"
Nurse: **Looks at both of us really oddly**
"Er, yes... I suppose that would be safe, but you shouldn't be breathing too much of this sort of dust..."
I love that. I mean, here I am, 10 days after my third cycle of ICE and feeling great! Great enough, in fact, to have re-tiled a kitchen, installed a stove/oven, and installed a new sink. Chew on that, cancer. :P
*** PS: ***
By the way... If you have a persistent cough and you have no cough syrup, why not use the numbing mouthwash instead? If your throat is tickling and causing you to cough, why not try to numb it with the mouthwash?
One could easily lie down, pour in some mouthwash, and let it sit for a while at the bottom of your throat.
Bad Idea. That is, unless you're ready to do laundry. You have a persistent cough, stupid. :P
Just a cautionary tale...
Finally! My BMT calendar has been drafted! So, without further ado, here it is:
September
15th: (9:30) To the ITA for labs, cxr, ekg. (11am) To Clinic E to meet with Doctor. (2:00pm) To the ITA for catheter and self-injection class.
16th: (2:30pm) Teaching for transplant class (bring caregiver). ***Nothing to eat or drink after midnight.***
17th: (?:??) Catheter placement.
18th: (9:00am) To unit E1 overnight for Cytoxan. Admit
19th: Discharge home with caregiver. Begin Neupogen and Antibiotics.
20-23rd: Neupogen at home.
24-28th: Neupogen at home. Visit Stanford daily for labs.
29th: Apheresis. May take 1-5 days.
October
10th: (2pm) To Clinic E for labs, cxr, ekg. (3pm) To Clinic to meet with Doctor.
14th: (10:00am) Begin Continuous IV heparin. Administer Gemcitabine, Navelbine on outpatient basis.
15th: My birthday!
19th: (10:00am) 10:00 Administer Gemcitabine, Navelbine on outpatient basis.
21st: (9:00am) Admit to BMT ward. Administer BCNU.
23rd: VP-16
25th: Cytoxan
26th: Sister's due date.
27th: Transplant!
28th: Recover for next 2-3 weeks.
That's it so far! The calendar is a bit sparse at places, but at least I know when everything is going down. Worrying about when everything is going to take place is the worst! So, even if it's not as aggressive as I'd like, at least I don't have to worry.
Speaking of which, I was thinking about something. Sometimes, I think this whole BMT process is geared toward 80 year olds. All the precautions and "mandatory caregiver" stuff... seems a bit excessive at times. Sure, the infection guidelines I can agree with. But, I can certainly inject myself with Neupogen after a wee dose of Cytoxan, and I'd like to think I can maintain my catheter throughout. Also, their estimates for recovery times seem quite high. Makes me think their system isn't geared for the young.
Then again, maybe I'm just weird. I do tolerate chemo pretty darn well.
For example, when Dan and I were visiting one of the nurses at Stanford... Her role was to explain, again, just what was going to happen in the following months. At one point, the conversation went something like this:
Nurse: "...and you'll have to wear the HEPA mask whenever you are outdoors. This is because of all the dust and dirt that you would kick up when you are outside. You should try to stay away from the dust."
Dan: "What about concrete?"
Nurse: "Yes, I would much rather Austin walk on a concrete path than a dirt path."
Dan: "No, I mean concrete dust. Like the kind found in construction, when you're mixing 'crete."
Nurse: **pause**
Austin: "That should be okay, right? Because the bacteria found in natural dirt isn't in commercial products, right?"
Nurse: **Looks at both of us really oddly**
"Er, yes... I suppose that would be safe, but you shouldn't be breathing too much of this sort of dust..."
I love that. I mean, here I am, 10 days after my third cycle of ICE and feeling great! Great enough, in fact, to have re-tiled a kitchen, installed a stove/oven, and installed a new sink. Chew on that, cancer. :P
*** PS: ***
By the way... If you have a persistent cough and you have no cough syrup, why not use the numbing mouthwash instead? If your throat is tickling and causing you to cough, why not try to numb it with the mouthwash?
One could easily lie down, pour in some mouthwash, and let it sit for a while at the bottom of your throat.
Bad Idea. That is, unless you're ready to do laundry. You have a persistent cough, stupid. :P
Just a cautionary tale...
Monday, September 8, 2008
[9-08-08] Motocancer
[4:42pm]
We left for Stanford today at 8:20am... we just got back. That's almost 9 hours on the road! This time, Dan drew the short straw -- he was the unfortunate cancer courier for this trip to Stanford.
It started with a plea to recover my motorcycle. For the past month or so, my motorcycle has been left abandoned in the city of Berkeley. Sometime last week, the permit expired, and I was constantly worried that the motorcycle would be towed... Additionally, without a motorcycle nearby, I am even more helpless without local transportation. Fortunately, Dan agreed to help me transport my motorcycle in his van (Thanks Dan!). [The reason I don't just ride the motorcycle from Berkeley to Santa Cruz is because a trip of that distance is very tiring. My family prefers that I be safe and avoid exerting myself too much while driving a motorcycle.]
Since Monday was also the day of my Stanford appointment, Dan was recruited to take me there as well. Unfortunately, Stanford is hardly on the way to Berkeley...
When we arrived, I was given the whole BMT spiel all over again. I re-learned about the risks, the difficulties, and the treatment details. Some new things I learned were about the long-term side effects. I always thought it was naive to assume that I would beat this cancer without some long-term battle damage... it appears that I was correct. Here's what I learned:
1: I will be infertile. I thought this was more like, "there is a 25% chance you will remain fertile." But this nurse seems pretty certain of this.
2: There is an 18%-20% chance of lung damage due to the Carmustine. It is possible to reverse this damage if caught quickly. I don't relish the thought of coughing the rest of my life.
3: 10% chance of developing a secondary cancer.
4: Unspecified chance of liver/kidney damage, since all these drugs work their way through the liver or kidneys.
That's most of what I remember. Oh, and maybe they have to mention it or something... but it is somewhat disturbing to be repeatedly told about the possibility of hair loss due to a chemotherapy agent. Uhm... Hello? I know... I lost it all already.
Oh well.
After that, she began talking about the particular clinical study I was to be a member of. In particular, I noted what she said about the study preceding (parent study?) mine. The previous study lacked two chemotherapy agents and had greater doses of Carmustine. She cited a 5 year remission rate of 50%. When I told her that my doctor expected around 80%, she seemed skeptical. I don't like that. However, perhaps that is because she lumped me in the same category as all Hodgkin's patients. Being stage IA Bulky has got to up the odds.
Throughout the meeting, the nurse expressed her shock that I *still* had no "BMT calendar" drawn up. She called my scheduling nurse, and allowed me a quick visit with her.
My scheduling nurse said that a calendar could not be drawn without me finishing certain preliminary tests. (Why haven't I taken had these tests scheduledearler? hmm?) Fortunately, I was given an opportunity to save lots of time: she could schedule me for my last test at 2pm (an echocardiogram), and have my calendar available for pickup then. I agreed, I had no choice... though it would be difficult.
You see, the current time was 11:30am. The echocardiogram was at 2:00pm. That leaves 2.5 hours to drive to Berkeley (through San Francisco), by some lumber for a makeshift ramp for my motorcycle, load my motorcycle into the van, and return to Stanford. It was difficult. In the end, I arrived at my echo about 30 minutes late. And yes, the receptionists gave me a very hard time about it. I felt bad, but still, it was a victory.
Well, not completely. After the echo, my scheduling nurse was too busy to create a calendar for me. Hopefully, I'll receive it via email this evening.
So, that was my day.
Also, unfortunately, I have more to add in the "side effects" department.
My throat hurts when I swallow. At times, it hurts my throat even when I speak. At night, the irritation seems to cause me to cough a bunch. Accordingly, I'm gulping down the "lidocaine mouthwash" every four hours. It helps, but doesn't seem to get rid of it... Barbara believes I might have an ulcer of some type in my throat. This has got to be the second worst side effect so far (nausea, of course, being #1). I'll have to make an appointment if this doesn't get better soon.
Additionally, most of my chest hairs have fallen out. The problem is, they also haven't stopped growing. So, I've got a bunch of red spots of ingrown hairs. eww. Sounds worse than it is though... like small bug bites.
Kinda makes one think how bad it'll get... Should be interesting...
We left for Stanford today at 8:20am... we just got back. That's almost 9 hours on the road! This time, Dan drew the short straw -- he was the unfortunate cancer courier for this trip to Stanford.
It started with a plea to recover my motorcycle. For the past month or so, my motorcycle has been left abandoned in the city of Berkeley. Sometime last week, the permit expired, and I was constantly worried that the motorcycle would be towed... Additionally, without a motorcycle nearby, I am even more helpless without local transportation. Fortunately, Dan agreed to help me transport my motorcycle in his van (Thanks Dan!). [The reason I don't just ride the motorcycle from Berkeley to Santa Cruz is because a trip of that distance is very tiring. My family prefers that I be safe and avoid exerting myself too much while driving a motorcycle.]
Since Monday was also the day of my Stanford appointment, Dan was recruited to take me there as well. Unfortunately, Stanford is hardly on the way to Berkeley...
When we arrived, I was given the whole BMT spiel all over again. I re-learned about the risks, the difficulties, and the treatment details. Some new things I learned were about the long-term side effects. I always thought it was naive to assume that I would beat this cancer without some long-term battle damage... it appears that I was correct. Here's what I learned:
1: I will be infertile. I thought this was more like, "there is a 25% chance you will remain fertile." But this nurse seems pretty certain of this.
2: There is an 18%-20% chance of lung damage due to the Carmustine. It is possible to reverse this damage if caught quickly. I don't relish the thought of coughing the rest of my life.
3: 10% chance of developing a secondary cancer.
4: Unspecified chance of liver/kidney damage, since all these drugs work their way through the liver or kidneys.
That's most of what I remember. Oh, and maybe they have to mention it or something... but it is somewhat disturbing to be repeatedly told about the possibility of hair loss due to a chemotherapy agent. Uhm... Hello? I know... I lost it all already.
Oh well.
After that, she began talking about the particular clinical study I was to be a member of. In particular, I noted what she said about the study preceding (parent study?) mine. The previous study lacked two chemotherapy agents and had greater doses of Carmustine. She cited a 5 year remission rate of 50%. When I told her that my doctor expected around 80%, she seemed skeptical. I don't like that. However, perhaps that is because she lumped me in the same category as all Hodgkin's patients. Being stage IA Bulky has got to up the odds.
Throughout the meeting, the nurse expressed her shock that I *still* had no "BMT calendar" drawn up. She called my scheduling nurse, and allowed me a quick visit with her.
My scheduling nurse said that a calendar could not be drawn without me finishing certain preliminary tests. (Why haven't I taken had these tests scheduledearler? hmm?) Fortunately, I was given an opportunity to save lots of time: she could schedule me for my last test at 2pm (an echocardiogram), and have my calendar available for pickup then. I agreed, I had no choice... though it would be difficult.
You see, the current time was 11:30am. The echocardiogram was at 2:00pm. That leaves 2.5 hours to drive to Berkeley (through San Francisco), by some lumber for a makeshift ramp for my motorcycle, load my motorcycle into the van, and return to Stanford. It was difficult. In the end, I arrived at my echo about 30 minutes late. And yes, the receptionists gave me a very hard time about it. I felt bad, but still, it was a victory.
Well, not completely. After the echo, my scheduling nurse was too busy to create a calendar for me. Hopefully, I'll receive it via email this evening.
So, that was my day.
Also, unfortunately, I have more to add in the "side effects" department.
My throat hurts when I swallow. At times, it hurts my throat even when I speak. At night, the irritation seems to cause me to cough a bunch. Accordingly, I'm gulping down the "lidocaine mouthwash" every four hours. It helps, but doesn't seem to get rid of it... Barbara believes I might have an ulcer of some type in my throat. This has got to be the second worst side effect so far (nausea, of course, being #1). I'll have to make an appointment if this doesn't get better soon.
Additionally, most of my chest hairs have fallen out. The problem is, they also haven't stopped growing. So, I've got a bunch of red spots of ingrown hairs. eww. Sounds worse than it is though... like small bug bites.
Kinda makes one think how bad it'll get... Should be interesting...
Sunday, September 7, 2008
[9-07-08] Good to be Home
[2:47pm]
With my sister's cold long gone and my WBC rising, I have now been given permission to return to home base. It's a good feeling. I've really missed my family... and my desktop. :P
Tomorrow is the second Stanford appointment! Starting at 10am, I sign the consent form and hopefully get things under way. They also requested my Pet/CT CD, which I took a peek at...
I thought the CD would be full of weird and inaccessible medical mumbo jumbo, but it was quite user friendly. Just plug in the CD, then it installs the software and loads your personal profile. There are cross-sections of your body on the left, and a vertical 3d representation of yourself on the right. I'll post some images sometime later.
Anyhow, the tumor *is* large. And by looking at the cross-sections on the left, I can see the high-activity parts of the tumor. Interesting to note, however, that some non-cancer regions of my body have about the same activity. Also interesting is that the tumor itself is cone-shaped, not solid. It looks kinda like a coffee mug, and the regions of activity are along the edges of the coffee-mug, not the center.
Anyhow, I just got home. So I'm going to get more settled in. More later.
With my sister's cold long gone and my WBC rising, I have now been given permission to return to home base. It's a good feeling. I've really missed my family... and my desktop. :P
Tomorrow is the second Stanford appointment! Starting at 10am, I sign the consent form and hopefully get things under way. They also requested my Pet/CT CD, which I took a peek at...
I thought the CD would be full of weird and inaccessible medical mumbo jumbo, but it was quite user friendly. Just plug in the CD, then it installs the software and loads your personal profile. There are cross-sections of your body on the left, and a vertical 3d representation of yourself on the right. I'll post some images sometime later.
Anyhow, the tumor *is* large. And by looking at the cross-sections on the left, I can see the high-activity parts of the tumor. Interesting to note, however, that some non-cancer regions of my body have about the same activity. Also interesting is that the tumor itself is cone-shaped, not solid. It looks kinda like a coffee mug, and the regions of activity are along the edges of the coffee-mug, not the center.
Anyhow, I just got home. So I'm going to get more settled in. More later.
Friday, September 5, 2008
[9-05-08] Lithium
[3:13pm]
Good news! My doctor did perform cytogenetics on my bone marrow biopsy! That means that I do not have to be subjected to another! Also, Liz is going to pick up my Pet/CT CD, so I won't have to drive to Berkeley the day of my Stanford appointment! Thanks Liz!
Ah, everything seems to be working out. It's a good feeling.
Feeling a little better than yesterday too. :)
You know, for some reason I've had that Nirvana song (Lithium) stuck in my head. Then I started thinking about 6th/7th grade... it's funny how Nirvana always does that. Around then, I had just moved to Kentucky from California, so everyone, for some reason, considered me "grunge" though I hadn't a clue what it actually meant. Nevertheless, I soon found myself occasionally wearing flannel and holding mixtapes of essential Nirvana songs.
Then I started thinking about that kid that was me. I wonder what he would say about my current situation. If he would get angry and blame me, or break down and cry. I was such a kid, then.
Just some thoughts...
Good news! My doctor did perform cytogenetics on my bone marrow biopsy! That means that I do not have to be subjected to another! Also, Liz is going to pick up my Pet/CT CD, so I won't have to drive to Berkeley the day of my Stanford appointment! Thanks Liz!
Ah, everything seems to be working out. It's a good feeling.
Feeling a little better than yesterday too. :)
You know, for some reason I've had that Nirvana song (Lithium) stuck in my head. Then I started thinking about 6th/7th grade... it's funny how Nirvana always does that. Around then, I had just moved to Kentucky from California, so everyone, for some reason, considered me "grunge" though I hadn't a clue what it actually meant. Nevertheless, I soon found myself occasionally wearing flannel and holding mixtapes of essential Nirvana songs.
Then I started thinking about that kid that was me. I wonder what he would say about my current situation. If he would get angry and blame me, or break down and cry. I was such a kid, then.
Just some thoughts...
Thursday, September 4, 2008
[9-04-08] Nausea
[4:27pm]
I am located on the boat, sitting cross-legged, and stationed in front of the television. The Giants vs. Redskins game is on. My cell phone, a thermometer, my laptop, a bottle of Ativan, some food and drink, and an empty fed-ex bag are all within my reach. Why the fed-ex bag? It was the nearest disposable container I could find.
In other words, this has been a very rough day for nausea... probably the worst. The kind of nausea where you gag and cough, have your mouth water, and grab the nearest container. Not fun. Anyhow, this is somewhat surprising to me -- you would think that the worst nausea would be during chemo, not afterwards. My theory is not that I am experiencing nausea directly from the chemo, instead, I am experiencing nausea due to the havoc that has been wrought to my gastrointestinal system. I hear chemo can due that. So, maybe, my stomach is so delicate right now, that it has difficulty holding anything.
This also may explain another side-effect I've been having. I was thinking that I was having some of those common mouth-sores under my tongue due to chemo, so the doctors prescribed some of that numbing mouthwash. However, now that I think about it, the pain was more located in the throat than in the mouth. In addition, occasionally it would be quite painful to talk, drink fluids, or swallow. Maybe it's part of the same problem: chemo killing those sensitive gastrointestinal cells.
Regardless of the cause, my only strategy is to take Ativan. I've also been trying to get something in my stomach (thinking that an empty stomach is contributing to my problem), but I can only eat a very small amount at a time. So that's where I'm at today. I'm sure the nausea will get better though -- it usually has it's bad moments, then goes away (especially with pill support).
It's also a bummer to miss watching the first football game of the season alone. But I still got to keep from getting sick.
--------------------------------------
There's been some developments on the Stanford front. Firstly, I may not need a BMT after all! The Stanford nurse has reported that I need the following tests:
1: A pulmonary function test (which I just had)
2: A Resting cardiac echo with doppler and estimated ejection fraction (which I'll need to get)
3: A Bone marrow biopsy with aspirate and cytogenetics (if the biopsy done late July included cytogenetics then another does not need to be done)
Please tell me the cytogenetics has been done!
The other news is that I have an appointment at Stanford on Monday at 10am. So things are progressing! It's mainly an appointment to collect my consent and my latest Pet/CT results. Nothing too big, I think, but maybe it'll establish a schedule for the next treatments.
The bummer is that I have to bring my latest Pet/CT CD, which means I have to drive to Berkeley and collect the CD in the morning, then drive to Stanford and deliver the CD. Cancer causes lots of driving!
I am located on the boat, sitting cross-legged, and stationed in front of the television. The Giants vs. Redskins game is on. My cell phone, a thermometer, my laptop, a bottle of Ativan, some food and drink, and an empty fed-ex bag are all within my reach. Why the fed-ex bag? It was the nearest disposable container I could find.
In other words, this has been a very rough day for nausea... probably the worst. The kind of nausea where you gag and cough, have your mouth water, and grab the nearest container. Not fun. Anyhow, this is somewhat surprising to me -- you would think that the worst nausea would be during chemo, not afterwards. My theory is not that I am experiencing nausea directly from the chemo, instead, I am experiencing nausea due to the havoc that has been wrought to my gastrointestinal system. I hear chemo can due that. So, maybe, my stomach is so delicate right now, that it has difficulty holding anything.
This also may explain another side-effect I've been having. I was thinking that I was having some of those common mouth-sores under my tongue due to chemo, so the doctors prescribed some of that numbing mouthwash. However, now that I think about it, the pain was more located in the throat than in the mouth. In addition, occasionally it would be quite painful to talk, drink fluids, or swallow. Maybe it's part of the same problem: chemo killing those sensitive gastrointestinal cells.
Regardless of the cause, my only strategy is to take Ativan. I've also been trying to get something in my stomach (thinking that an empty stomach is contributing to my problem), but I can only eat a very small amount at a time. So that's where I'm at today. I'm sure the nausea will get better though -- it usually has it's bad moments, then goes away (especially with pill support).
It's also a bummer to miss watching the first football game of the season alone. But I still got to keep from getting sick.
--------------------------------------
There's been some developments on the Stanford front. Firstly, I may not need a BMT after all! The Stanford nurse has reported that I need the following tests:
1: A pulmonary function test (which I just had)
2: A Resting cardiac echo with doppler and estimated ejection fraction (which I'll need to get)
3: A Bone marrow biopsy with aspirate and cytogenetics (if the biopsy done late July included cytogenetics then another does not need to be done)
Please tell me the cytogenetics has been done!
The other news is that I have an appointment at Stanford on Monday at 10am. So things are progressing! It's mainly an appointment to collect my consent and my latest Pet/CT results. Nothing too big, I think, but maybe it'll establish a schedule for the next treatments.
The bummer is that I have to bring my latest Pet/CT CD, which means I have to drive to Berkeley and collect the CD in the morning, then drive to Stanford and deliver the CD. Cancer causes lots of driving!
Wednesday, September 3, 2008
[9-03-08] Post ICE Appointment
[12:06pm]
I just got back from my oncology appointment in Berkeley. All that traveling (we left at 5:30am) has left me utterly exhausted! It appears I've become as pathetic, perhaps more, than the worst part of Stanford V. Last I checked, my hemoglobin was at 10.5; the worst during Stanford V was 10.1. However, my pulse today was an incredible 127! From what Barbara tells me, this is because my blood is delivering less oxygen per cell, so the heart has to pump faster. Still, under Stanford V, my pulse was never this high. Therefore, I conclude that my hemoglobin is under 10.1, and I am now at an all time low. Woohoo!
I vow to not move more than 100 feet in the next day. :P That's how tired I am.
Then there's the nausea, which is still quite annoying. For the first time, smells and tastes trigger it. I find I am very picky what foods I eat, which is strange because I can simultaneously be hungry and want to eat nothing at the same time. One morning, I nearly lost my stomach because the water tasted weird... though, the nausea is always worst in the morning.
But 1 ativan every four hours (two in emergency) always seems to do the trick.
As for the appointment itself, it was mostly good news.
First off, my doctor was extremely amazed at how well I handled the three sessions of ICE. Maybe they say that to all the patients, but the compliment felt nice, and I do think I have a resilience to the stuff.
Anyhow, my doctor talked with the Stanford doctor, and they are communicating! He seems to be under the impression that the Stanford doctor wanted a 4th ICE, but I think that's just up in the air in the moment. The important thing, is that they set up a referral appointment. During this appointment, I believe that I will be administered Cytoxan, and have apheresis performed within a few days. The only question: how soon can I get this appointment?
Additionally, my doctor seemed to indicate something quite distressing, and referred to it as a "holding pattern." Let's say that you're on your third ICE and apheresis has been performed, but the Stanford BMT rooms are currently booked. They may just give you a 4th ICE to keep the cancer in check as they wait for another room to open up. If a room was open in the first place, then no 4th ICE, and proceed to BMT. This is disturbing. I like cancer treatments to have a strategic purpose, not an administrative one.
The other distressing news was delivered in a scripted manner. Remember when the Stanford nurse was telling me about all the new tests that would need to be accomplished? "First the Muga, that's easy... then the Pet/CT, that's easy... then the Bone Marrow Biopsy, that's hard." Well, my doctor said pretty much the same thing verbatim. They know you're terrified about this, and perhaps they all go to the same seminar on how to deliver the bad news. I swear, my physician delivered the news that I had cancer far more directly and bluntly than the news that I need a bone marrow biopsy.
We told him that we weren't going to do it without sedation of some kind. I asked him if there was a way he could perform the procedure in a "humane" way. He looked a little flustered and apologetic at this. Perhaps I should have worded that differently. "We used to provide some sort of sedation for the procedure," he said, "but the new FDA regulations are unreasonable regarding the amount of equipment and manpower for a conscious sedation bone marrow biopsy." [Damn the FDA]
We told him that we would seek out other places that would perform this procedure. He said that there were places that would do this, but also warned that "Stanford may want to do things their way." It's funny, the threat of a bone marrow biopsy this time around did not illicit the emotional response of last time. Knowing that I would be sedated, or something, at all costs, gave me the comfort I needed. Even if I have to go to downtown Oakland for heroin before my biopsy...ok, maybe not that far...but you get my point!
It's good to have my normal oncologist back from vacation. He went to Ecuador. So I asked him, "I'm dying to know -- did you go to Galapagos?" He looked genuinely pleased that I asked, and then told me that he did not. That's like going to Egypt without visiting the pyramids! Oh well.
I just got back from my oncology appointment in Berkeley. All that traveling (we left at 5:30am) has left me utterly exhausted! It appears I've become as pathetic, perhaps more, than the worst part of Stanford V. Last I checked, my hemoglobin was at 10.5; the worst during Stanford V was 10.1. However, my pulse today was an incredible 127! From what Barbara tells me, this is because my blood is delivering less oxygen per cell, so the heart has to pump faster. Still, under Stanford V, my pulse was never this high. Therefore, I conclude that my hemoglobin is under 10.1, and I am now at an all time low. Woohoo!
I vow to not move more than 100 feet in the next day. :P That's how tired I am.
Then there's the nausea, which is still quite annoying. For the first time, smells and tastes trigger it. I find I am very picky what foods I eat, which is strange because I can simultaneously be hungry and want to eat nothing at the same time. One morning, I nearly lost my stomach because the water tasted weird... though, the nausea is always worst in the morning.
But 1 ativan every four hours (two in emergency) always seems to do the trick.
As for the appointment itself, it was mostly good news.
First off, my doctor was extremely amazed at how well I handled the three sessions of ICE. Maybe they say that to all the patients, but the compliment felt nice, and I do think I have a resilience to the stuff.
Anyhow, my doctor talked with the Stanford doctor, and they are communicating! He seems to be under the impression that the Stanford doctor wanted a 4th ICE, but I think that's just up in the air in the moment. The important thing, is that they set up a referral appointment. During this appointment, I believe that I will be administered Cytoxan, and have apheresis performed within a few days. The only question: how soon can I get this appointment?
Additionally, my doctor seemed to indicate something quite distressing, and referred to it as a "holding pattern." Let's say that you're on your third ICE and apheresis has been performed, but the Stanford BMT rooms are currently booked. They may just give you a 4th ICE to keep the cancer in check as they wait for another room to open up. If a room was open in the first place, then no 4th ICE, and proceed to BMT. This is disturbing. I like cancer treatments to have a strategic purpose, not an administrative one.
The other distressing news was delivered in a scripted manner. Remember when the Stanford nurse was telling me about all the new tests that would need to be accomplished? "First the Muga, that's easy... then the Pet/CT, that's easy... then the Bone Marrow Biopsy, that's hard." Well, my doctor said pretty much the same thing verbatim. They know you're terrified about this, and perhaps they all go to the same seminar on how to deliver the bad news. I swear, my physician delivered the news that I had cancer far more directly and bluntly than the news that I need a bone marrow biopsy.
We told him that we weren't going to do it without sedation of some kind. I asked him if there was a way he could perform the procedure in a "humane" way. He looked a little flustered and apologetic at this. Perhaps I should have worded that differently. "We used to provide some sort of sedation for the procedure," he said, "but the new FDA regulations are unreasonable regarding the amount of equipment and manpower for a conscious sedation bone marrow biopsy." [Damn the FDA]
We told him that we would seek out other places that would perform this procedure. He said that there were places that would do this, but also warned that "Stanford may want to do things their way." It's funny, the threat of a bone marrow biopsy this time around did not illicit the emotional response of last time. Knowing that I would be sedated, or something, at all costs, gave me the comfort I needed. Even if I have to go to downtown Oakland for heroin before my biopsy...ok, maybe not that far...but you get my point!
It's good to have my normal oncologist back from vacation. He went to Ecuador. So I asked him, "I'm dying to know -- did you go to Galapagos?" He looked genuinely pleased that I asked, and then told me that he did not. That's like going to Egypt without visiting the pyramids! Oh well.
Tuesday, September 2, 2008
[9-02-08] Complaining
[12:35pm]
Two are two people admitted for the same thing in the same hospital: both have accidentally cut off a finger and are bleeding profusely.
The first man screams to the triage nurse, "Ohmygod ohmygod, it HURTS SOOOOO MUCH!!! The PaiN, the aGoNy!!!!. Why me? Why does this have to happen to me??"
The second man calmly approaches the triage nurse, "I seem to have cut off my finger. It is extremely painful."
For both patients, the nurse jots down: "Patient complained of pain due to finger loss."
It seems that complaining, in a medical sense, simply means reporting something negative or distressing. With that in mind, I would like to do some complaining.
So...
I didn't really write all of what I thought...Why was I so upset yesterday?
1:I was homesick. After being away from home for so long, I began to miss all of those wonderful things associated with home.
2:I missed my family, and wanted to tell them what was new in my life, and to find out what was new in theirs. Also, I wanted to see my nieces.
3:I was extremely tired from the trip, and just wanted to lie down. In addition, I was craving my own bed for days now.
4:It's cancer, exerting yet more control on my life.
Ok, now why was I so upset to stay on the boat? First off, I'd like to say that Barbara has been great: she sat me in a comfy corner, did my laundry, purchased food, fed me, and kept me entertained as she cleared room for me to live in. All I had to do was play my little DS until everything was ready.
So, as with every small yacht, there are some things which are more difficult. For example, very quick showers and a pump toilet. And for the person with low hemoglobin, it takes a great deal of effort to make it from the forward berth (bed) to the aft toilet. This trip may happen quite often. It's also Barbara's office, so the small area is quite full of stuff. Anyhow, I'll leave out the rest. Nevertheless, it's not optimal for neutropenic cancer patients.
Ok, enough complaining -- now for some good news! It looks like I wont have another ICE treatment! I sent the following letter to my Stanford Doctor:
I got back the following reply:
So... awesome! I could be getting the transplant sooner than I thought! Oh, and I have an appointment with my oncologist tomorrow morning! So things are moving smoothly!
Two are two people admitted for the same thing in the same hospital: both have accidentally cut off a finger and are bleeding profusely.
The first man screams to the triage nurse, "Ohmygod ohmygod, it HURTS SOOOOO MUCH!!! The PaiN, the aGoNy!!!!. Why me? Why does this have to happen to me??"
The second man calmly approaches the triage nurse, "I seem to have cut off my finger. It is extremely painful."
For both patients, the nurse jots down: "Patient complained of pain due to finger loss."
It seems that complaining, in a medical sense, simply means reporting something negative or distressing. With that in mind, I would like to do some complaining.
So...
I didn't really write all of what I thought...Why was I so upset yesterday?
1:I was homesick. After being away from home for so long, I began to miss all of those wonderful things associated with home.
2:I missed my family, and wanted to tell them what was new in my life, and to find out what was new in theirs. Also, I wanted to see my nieces.
3:I was extremely tired from the trip, and just wanted to lie down. In addition, I was craving my own bed for days now.
4:It's cancer, exerting yet more control on my life.
Ok, now why was I so upset to stay on the boat? First off, I'd like to say that Barbara has been great: she sat me in a comfy corner, did my laundry, purchased food, fed me, and kept me entertained as she cleared room for me to live in. All I had to do was play my little DS until everything was ready.
So, as with every small yacht, there are some things which are more difficult. For example, very quick showers and a pump toilet. And for the person with low hemoglobin, it takes a great deal of effort to make it from the forward berth (bed) to the aft toilet. This trip may happen quite often. It's also Barbara's office, so the small area is quite full of stuff. Anyhow, I'll leave out the rest. Nevertheless, it's not optimal for neutropenic cancer patients.
Ok, enough complaining -- now for some good news! It looks like I wont have another ICE treatment! I sent the following letter to my Stanford Doctor:
Since I have not yet heard from Stanford, I thought I would post my current situation regarding my treatment. Perhaps this will help solidify a schedule for my transfer into Stanford care.
The latest Pet/CT scan, taken 13 days after ICE cycle #2 shows a partial response to the treatment so far. Tumor size has reduced about 10%, and the metabolism has decreased 60% (from a 5 to a 2).
My doctor considers this very good news.
Accordingly, he has scheduled two more cycles of ICE. When I asked him about apheresis, he said that he will do what Stanford recommends. Unfortunately, it seems he has not contacted you all yet -- he said that he would try sometime next week
Apheresis is a big concern right now because, as I understand it, it is possible to expedite the collection of stem cells by combining ICE with G-CSF or some such. I am aware that Cytoxan mobilization is probably the current choice, but it looks like that introduces more delay, and I would like to try my hardest to begin treatment as soon as possible.
If at all possible, would you be willing to coordinate with myself or my doctors to help make it so that I begin outpatient chemo at Stanford as soon as possible? Perhaps starting with apheresis?
Please let me if there is anything else you would like to know. Also, please let me know what you think, or if you could outline a possible schedule for treatment.
Thank you,
- Austin
I got back the following reply:
I have not heard from Dr. Irwin yet so thank you for the update. With some residual disease present after the 2nd ICE, I agree with proceeding to the 3rd ICE- It is my plan to give you cyclophosphamide after this cycle 3 and collect the stem cells off of the cyclophosphamide. A fourth ICE is likely not necessary with your disease responding and our plan to go forward with transplant (keeps the toxicity down).
Zoe should be back in the office after the holiday and will get your calendar set up. There has been no lost time and everything is moving forward smoothly, so not to worry. Thanks again for the message.
So... awesome! I could be getting the transplant sooner than I thought! Oh, and I have an appointment with my oncologist tomorrow morning! So things are moving smoothly!
[9-02-08] Isolation
[12:13am]
It's been a long day. So I'll keep this brief, before I fall into slumber.
Yesterday, Liz and I spent a lovely day looking at a new house for rent. This particular place probably wont work out, but it was fun nonetheless. We also spent a good deal of time trying to get me fed -- which is quite harder than it looks when you are limited to restaurants which serve fully cooked food to patrons outdoors.
It's all due to the neutropenia thing. I can't eat uncooked vegetables or anything for that matter: microbes and whatnot. Also, I can't be in crowded places without a hepa-mask on: people with their colds, and whatnot. So, if we want to eat out, we have to eat outdoors. After waiting about an hour for a seat outdoors, we decided to bail and get some take-out.
(Get This: While looking for alternative food options we found a "taqueria" that did not serve burritos! In fact, the lady got a little snippy when I asked for one. Sheesh, no need to get mad at me just because you work in a pseudo-taqueria. Am I wrong?)
Anyhow, I wake up today (Monday), and Liz drops me off at the bart (transit) station. Dutifully, I don my blue hepa-mask and confirm to the world that I am a cancer-infested chemo-eater. It's not a garment to be proud of. I'm sitting there in a train with two signs: on the left, there is a sign for breast cancer awareness; on the right, there is a sign for a leukemia and lymphoma marathon. Then there is these normal people sitting there casually, noting me, and noting the two cancer signs behind me. I can see them feeling the plague upon them, and not wanting to acknowledge it. For you see, I am sick. And society does not like sick people.
But the topic for today is isolation. I need to protect myself from a cold or something because my immune system is so weak. Accordingly, I need to avoid the deadly germ -- to avoid anything which may propagate or spread this evil menace. So, I can't go home.
Unfortunately, my sister and her daughters seem to have caught a bit of a cold at the herbal symposium this weekend. So, after a long day of traveling, I have to establish a new home-base on the boat to the south...and it is a messy boat too :P Still, I was really, really, really, tired at that point. I wanted nothing more than to just lie down. So, before I can lie down, I've got to get situated. Thankfully, Barbara is getting everything arranged while I casually play my Nintendo DS -- otherwise it'd be all too much.
So, writing really helps me vent... but I feel it necessary to point out that I was really quite pissed off about all this. Not at any thing, and especially not toward any person, except... this damn cancer. I just don't like it. It sucks.
But, as I said, writing helps. I'm good now. I'm going to go make some nachos and then go to sleep. Cancer still sucks, but at least I can still gorge myself on nachos. Goodnight.
It's been a long day. So I'll keep this brief, before I fall into slumber.
Yesterday, Liz and I spent a lovely day looking at a new house for rent. This particular place probably wont work out, but it was fun nonetheless. We also spent a good deal of time trying to get me fed -- which is quite harder than it looks when you are limited to restaurants which serve fully cooked food to patrons outdoors.
It's all due to the neutropenia thing. I can't eat uncooked vegetables or anything for that matter: microbes and whatnot. Also, I can't be in crowded places without a hepa-mask on: people with their colds, and whatnot. So, if we want to eat out, we have to eat outdoors. After waiting about an hour for a seat outdoors, we decided to bail and get some take-out.
(Get This: While looking for alternative food options we found a "taqueria" that did not serve burritos! In fact, the lady got a little snippy when I asked for one. Sheesh, no need to get mad at me just because you work in a pseudo-taqueria. Am I wrong?)
Anyhow, I wake up today (Monday), and Liz drops me off at the bart (transit) station. Dutifully, I don my blue hepa-mask and confirm to the world that I am a cancer-infested chemo-eater. It's not a garment to be proud of. I'm sitting there in a train with two signs: on the left, there is a sign for breast cancer awareness; on the right, there is a sign for a leukemia and lymphoma marathon. Then there is these normal people sitting there casually, noting me, and noting the two cancer signs behind me. I can see them feeling the plague upon them, and not wanting to acknowledge it. For you see, I am sick. And society does not like sick people.
But the topic for today is isolation. I need to protect myself from a cold or something because my immune system is so weak. Accordingly, I need to avoid the deadly germ -- to avoid anything which may propagate or spread this evil menace. So, I can't go home.
Unfortunately, my sister and her daughters seem to have caught a bit of a cold at the herbal symposium this weekend. So, after a long day of traveling, I have to establish a new home-base on the boat to the south...and it is a messy boat too :P Still, I was really, really, really, tired at that point. I wanted nothing more than to just lie down. So, before I can lie down, I've got to get situated. Thankfully, Barbara is getting everything arranged while I casually play my Nintendo DS -- otherwise it'd be all too much.
So, writing really helps me vent... but I feel it necessary to point out that I was really quite pissed off about all this. Not at any thing, and especially not toward any person, except... this damn cancer. I just don't like it. It sucks.
But, as I said, writing helps. I'm good now. I'm going to go make some nachos and then go to sleep. Cancer still sucks, but at least I can still gorge myself on nachos. Goodnight.
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