[9:28pm]
I've learned to dread my Stanford appointments... not because of anything medical, but because of the tremendous amount of time wasted. Today, surprisingly, wasn't too bad -- only a couple of hours of waiting. Still, I think about a recent house episode: A random character freaks out and smacks the table because, "I've been waiting for over an hour."
Pfft. That's nothing :P
My true nemesis was the rain. At the last minute, I discover that it is going to rain on Monday. I had no choice, and there was too little time to figure out some sort of other means of transportation... so I had to drive the motorcycle to Stanford.
Not fun at all. The cool part was that I bought some really heavy duty construction rainproof gear in preparation for the trip. So I didn't get too wet. And, entering the clinic with the Darth Vader mask and a bright yellow jumpsuit got some odd looks.
OK, onto the important stuff. The CT scan I received on Friday was completely clear; there was no sign of fungal infection in the lungs. So that's good. And the really good news is that I should only need one more bone marrow biopsy! And it can be from 6 to 12 months from now! Of course, why was I incorrectly told that I needed a barrage of biopsies in the first place? These medical professionals should use words like "I believe..." or "Typically..." instead of "You will have..." when there is uncertainty or just plain guesswork.
I digress.
Other than that, I should start to see my local oncologist and have a Pet-CT in three weeks or so. And that's about it!
Hmm... Why couldn't this appointment have been skipped entirely, and the news been delivered on the phone? Oh well, I'm just glad the Stanford phase is officially over (though I have a few remaining appointments, for some reason).
Showing posts with label appointment. Show all posts
Showing posts with label appointment. Show all posts
Monday, December 15, 2008
Monday, December 1, 2008
[12-01-08] Stanford Appointment
[10:37pm]
Today was my appointment... it was exhausting. I left my house at 10:30am and returned at 7:30pm for a 20 minute appointment with my doctor. Transit time was 2.5 hours (one way), labwork had an hour wait, and the clinic appointment had an 80 minute wait. A whole day wasted; I'm so tired of this stuff. It will be much better once I have my own transportation, of course.
Then I have two more appointments scheduled two weeks from now. So I have freedom for 12 of the next 14 days... the price paid for two 20 minute appointments. Bah. But enough complaining...
I did get to learn a few things. Top on my list was the bone marrow biopsy. Apparently, the biopsy is to determine whether I had any chromosome damage/toxicity due to the high dose chemo. This sort of damage could be classified as pre-cancerous. So, unfortunately, it looks like it is justified. My doctor plans for two more biopsies (coupled with pet-CT scans): one about a month from now, and another in 4 months. Fortunately, it doesn't look like the bone marrow biopsies will be a part of the routine in the years to come.
I then asked about transferring my care to my local oncologist. I explained how routine transportation to and from Stanford would make school in Berkeley quite difficult. My doctor ignored the initial question and instead explained how she felt that it was too early (by about 3 months) to return to school. I then firmly explained that "for the sake of my happiness, I need to return to school... soon." Surprisingly, she just nodded and then made sure I was taking a reduced courseload. As for transferring my care locally, she said that should begin at our next appointment, two weeks from now.
She also scheduled another CT scan before my next appointment. It has nothing to do with cancer -- there was a subtle "Nodular Grand-Glass Opacity" seen on my last CT scan taken while I was hospitalized. It usually indicates a fungal lung infection of some kind, that I obtained due to my severely impaired immune system. From what I gather, it is typically of little concern at this stage, and it usually fixes itself when confronted with a stronger immune system... it is only a problem when it gets out of hand. But, as my scans indicate, it is very subtle.
I then asked: "In your opinion, is the cancer gone?" Her response was something like, "Right now, yes, I believe it is." I didn't like that response... something in the way she said "right now" seemed to stress the possibility of a relapse. Or perhaps she was just trying indicate that further intervention, such as radiation, would be necessary. Or maybe, by "right now", she meant "with the information I currently possess, I believe..." She could be trying to indicate that the results from the bone marrow biopsy or pet-CT scan would change her opinion. Regardless... that is what I am left with.
We also talked briefly about the mask: I am now officially allowed to take it off in most situations. I only have to wear it around sick people, dusty outside areas, or in hospitals.
Also, radiation was briefly mentioned. It does look like that it will be able to be handled by my local radiation oncologist. Woo-hoo! She said we will talk about it further at my next appointment.
Lastly, I asked about plane travel to Michigan. I had an invitation to visit Liz's family and wanted to see what my doctor thought. When I told her the date, she adamantly opposed the idea. "Maybe if it were two months later than it is," she said. Oh well. Heh... the thought of wearing that huge scary mask on the plane... they'd probably think I was a terrorist with a gas bomb or something.
That's it for the appointment!
On my way home, I was actually feeling quite down. I'm not exactly sure why... maybe it was from something my doctor said, or from exhaustion from the day of traveling, or perhaps from cancer stealing yet another day of my life. Accordingly, I stopped by 7-11 to buy my ultimate comfort food: nachos.
I've bought these particular nachos countless times in the past, and today... they didn't taste very good. Just another brick in the wall.
I'm just so tired of all this stuff. At first it seemed like I had a limitless capacity to battle cancer -- an infinite endurance. I think perhaps I have less than I thought. Those cancer warriors out there... the people that fight this stuff for years and years... how do they do it?
Maybe it's just post BMT stress/anxiety/depression/trauma whatever. It's probably temporary. But it feels like something has taken it's toll.
Barbara mentioned that she didn't agree with my "head in the sand" strategy. Of course! It's a totally stupid proposition! It's not a strategy at all! But, you know, those few moments in the sand are quite peaceful...
Today was my appointment... it was exhausting. I left my house at 10:30am and returned at 7:30pm for a 20 minute appointment with my doctor. Transit time was 2.5 hours (one way), labwork had an hour wait, and the clinic appointment had an 80 minute wait. A whole day wasted; I'm so tired of this stuff. It will be much better once I have my own transportation, of course.
Then I have two more appointments scheduled two weeks from now. So I have freedom for 12 of the next 14 days... the price paid for two 20 minute appointments. Bah. But enough complaining...
I did get to learn a few things. Top on my list was the bone marrow biopsy. Apparently, the biopsy is to determine whether I had any chromosome damage/toxicity due to the high dose chemo. This sort of damage could be classified as pre-cancerous. So, unfortunately, it looks like it is justified. My doctor plans for two more biopsies (coupled with pet-CT scans): one about a month from now, and another in 4 months. Fortunately, it doesn't look like the bone marrow biopsies will be a part of the routine in the years to come.
I then asked about transferring my care to my local oncologist. I explained how routine transportation to and from Stanford would make school in Berkeley quite difficult. My doctor ignored the initial question and instead explained how she felt that it was too early (by about 3 months) to return to school. I then firmly explained that "for the sake of my happiness, I need to return to school... soon." Surprisingly, she just nodded and then made sure I was taking a reduced courseload. As for transferring my care locally, she said that should begin at our next appointment, two weeks from now.
She also scheduled another CT scan before my next appointment. It has nothing to do with cancer -- there was a subtle "Nodular Grand-Glass Opacity" seen on my last CT scan taken while I was hospitalized. It usually indicates a fungal lung infection of some kind, that I obtained due to my severely impaired immune system. From what I gather, it is typically of little concern at this stage, and it usually fixes itself when confronted with a stronger immune system... it is only a problem when it gets out of hand. But, as my scans indicate, it is very subtle.
I then asked: "In your opinion, is the cancer gone?" Her response was something like, "Right now, yes, I believe it is." I didn't like that response... something in the way she said "right now" seemed to stress the possibility of a relapse. Or perhaps she was just trying indicate that further intervention, such as radiation, would be necessary. Or maybe, by "right now", she meant "with the information I currently possess, I believe..." She could be trying to indicate that the results from the bone marrow biopsy or pet-CT scan would change her opinion. Regardless... that is what I am left with.
We also talked briefly about the mask: I am now officially allowed to take it off in most situations. I only have to wear it around sick people, dusty outside areas, or in hospitals.
Also, radiation was briefly mentioned. It does look like that it will be able to be handled by my local radiation oncologist. Woo-hoo! She said we will talk about it further at my next appointment.
Lastly, I asked about plane travel to Michigan. I had an invitation to visit Liz's family and wanted to see what my doctor thought. When I told her the date, she adamantly opposed the idea. "Maybe if it were two months later than it is," she said. Oh well. Heh... the thought of wearing that huge scary mask on the plane... they'd probably think I was a terrorist with a gas bomb or something.
That's it for the appointment!
On my way home, I was actually feeling quite down. I'm not exactly sure why... maybe it was from something my doctor said, or from exhaustion from the day of traveling, or perhaps from cancer stealing yet another day of my life. Accordingly, I stopped by 7-11 to buy my ultimate comfort food: nachos.
I've bought these particular nachos countless times in the past, and today... they didn't taste very good. Just another brick in the wall.
I'm just so tired of all this stuff. At first it seemed like I had a limitless capacity to battle cancer -- an infinite endurance. I think perhaps I have less than I thought. Those cancer warriors out there... the people that fight this stuff for years and years... how do they do it?
Maybe it's just post BMT stress/anxiety/depression/trauma whatever. It's probably temporary. But it feels like something has taken it's toll.
Barbara mentioned that she didn't agree with my "head in the sand" strategy. Of course! It's a totally stupid proposition! It's not a strategy at all! But, you know, those few moments in the sand are quite peaceful...
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!
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!
Wednesday, September 10, 2008
[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...
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.
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