[1:02pm]
Ah, yes. Michigan was good!
The trip there was quite an ordeal: Two flights delayed 3 hours each made for a travel time of about 12 hours. I was in the middle of a crowded airport, waiting for a flight, with sick people among us -- I smile to think what the nurses/doctors in Stanford would say to that.
Basically, I expected to get sick during some point of this trip... cold weather, snow, airplane travel, travel strain. But I didn't (other than a few sniffles)!
And I got to meet Liz's family for the first time! Great people -- I really felt welcome and enjoyed their company. Plus, Liz's mom really put together an amazing amount of excellent food! Real Christmas dinners! I'm not used to the whole sha-bang.
It wasn't as nearly as cold as I thought it would be, but there was snow. A white Christmas, indeed. But, it's good to be back. Time to unwind.
I also had an appointment with my local oncologist today -- nothing new, or anything -- just scheduling a Pet-CT scan and referral to my radiation oncologist. Nice to not have to waste a whole day for a 20 minute appointment.
Wednesday, December 31, 2008
Monday, December 29, 2008
[12-29-08] Return
I just got back from a very long trip from Michigan a few minutes ago.
Dead tired. Will post all about it tomorrow.
Dead tired. Will post all about it tomorrow.
Monday, December 22, 2008
[12-22-08] Christmas
[3:48pm]
I saw my family on Saturday... it was nice. I kinda surprised myself: I wasn't nervous in the slightest. I've gotten so entirely used to my bald head, my diagnosis, prognosis, and all that... that I'm totally comfortable with it, even if others are not.
Regardless, everyone was real friendly and it was nice to see familiar faces.
Now, in just a few days, I get to see some new faces in Michigan! I'm totally looking forward to it! My greatest fear is the cold -- I'm such a California wimp when it comes to cold weather. In fact, before the BMT I know I was more resistant to the cold. Or am I paranoid?
It just seems that everything changes after the BMT... mentally and physically. No wonder they call it being re-born.
Happy Holidays!
I saw my family on Saturday... it was nice. I kinda surprised myself: I wasn't nervous in the slightest. I've gotten so entirely used to my bald head, my diagnosis, prognosis, and all that... that I'm totally comfortable with it, even if others are not.
Regardless, everyone was real friendly and it was nice to see familiar faces.
Now, in just a few days, I get to see some new faces in Michigan! I'm totally looking forward to it! My greatest fear is the cold -- I'm such a California wimp when it comes to cold weather. In fact, before the BMT I know I was more resistant to the cold. Or am I paranoid?
It just seems that everything changes after the BMT... mentally and physically. No wonder they call it being re-born.
Happy Holidays!
Monday, December 15, 2008
[12-15-08] Appointment
[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).
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).
Monday, December 8, 2008
[12-08-08] Format C:
[3:09pm]
I just cleaned my room and fully set-up my workspace. In other words, as of now, I am fully moved in. It always takes longer the first time... a lot of asking "where should I put this?" The next time, everything has its place and the cleaning goes a lot quicker. So I think it's a milestone of sorts... and I've been putting it off since I moved in.
Also, in the digital realm, I formatted my computer's system drive today. After a year or so, my computer gets quite... disorganized. I find that wiping the system drive and reinstalling the applications I use is the quickest way to get re-organized.
And I want to get organized. I want to get to work! I want to produce! The first step... is creating a clean workspace. Another milestone of sorts.
This all is a manifestation of my desire to return to the real world. Time to go from escapist gamer to student (more casual gamer). Time to get ready for college, graduation, and apply myself for success in the real world... again. Time to put cancer in the background.
Of course, there are times where the cancer/treatment is unavoidably in the foreground... like when my radiation treatments start in a few months. But, until then, I am allowed certain some freedom in not having an appointment every other day. So, I think I'll use this downtime as an opportunity to give my mind a break and spend less time thinking about the cancer.
It's a change of mental posture. Time for a relaxed stance.
This includes my blog, of course. I'm not really thinking about it as much, and I certainly don't want to try to think about the cancer... that's like dwelling on it. So, I'll just say less... that is, unless there is an event/appointment or something that gives me something to talk about.
Accordingly, I'm going to reduce my posts to every Monday until my radiation treatments start. Of course, I'll also post as soon as I can if there's any news or events.
That being said... see ya next week for my (supposedly) last Stanford appointment!
I just cleaned my room and fully set-up my workspace. In other words, as of now, I am fully moved in. It always takes longer the first time... a lot of asking "where should I put this?" The next time, everything has its place and the cleaning goes a lot quicker. So I think it's a milestone of sorts... and I've been putting it off since I moved in.
Also, in the digital realm, I formatted my computer's system drive today. After a year or so, my computer gets quite... disorganized. I find that wiping the system drive and reinstalling the applications I use is the quickest way to get re-organized.
And I want to get organized. I want to get to work! I want to produce! The first step... is creating a clean workspace. Another milestone of sorts.
This all is a manifestation of my desire to return to the real world. Time to go from escapist gamer to student (more casual gamer). Time to get ready for college, graduation, and apply myself for success in the real world... again. Time to put cancer in the background.
Of course, there are times where the cancer/treatment is unavoidably in the foreground... like when my radiation treatments start in a few months. But, until then, I am allowed certain some freedom in not having an appointment every other day. So, I think I'll use this downtime as an opportunity to give my mind a break and spend less time thinking about the cancer.
It's a change of mental posture. Time for a relaxed stance.
This includes my blog, of course. I'm not really thinking about it as much, and I certainly don't want to try to think about the cancer... that's like dwelling on it. So, I'll just say less... that is, unless there is an event/appointment or something that gives me something to talk about.
Accordingly, I'm going to reduce my posts to every Monday until my radiation treatments start. Of course, I'll also post as soon as I can if there's any news or events.
That being said... see ya next week for my (supposedly) last Stanford appointment!
Friday, December 5, 2008
[12-05-08] Michigan
[7:26pm]
During the many hours of wait on the day of my Monday appointment, I had a lot of time to talk with my grandmother. I recall her asking on various subjects: "Are you allowed to ...," or "Can you ...," or "Will you be able to ..."
I remember defiantly answering "yes" to all of those questions. At first, she would give me a perplexed look and I would have to clarify: "Yes I can do that, but the doctors say that it is not allowed." And again, "Certainly, but it is not recommended."
Soon, she was rephrasing all of her questions. No longer was my freedom in question... instead, it was my choices or the doctor's recommendations that was in question. It was a good feeling.
Even if you're not being defiant, just changing your perspective can mean a world of difference. Say you technically have fourteen days remaining before you are supposed to go outside without your mask. There's a world of difference between "I can't go outside without my mask" and "I have chosen not to go outside without my mask." The latter implies freedom.
If you still have your freedom, then that's one less thing the cancer has taken away.
As you may recall, I was told not to fly to Michigan for Christmas holiday. I wasn't given a recommendation, I was told not to fly. Well, I want to go. In addition, I don't think it's a stupid decision. If I do get sick, I'm sure I'll pull through fine... it may just be a bit more prolonged and annoying that others may experience. Flying may slightly increase risk of medical trouble, but isn't that life? And I feel like living! Whether that be from living like a normal human or by taking chances...
"Get busy living, or get busy dying."
On a side note, I had a Snickers today... it was the first food post-BMT that tasted 100% as good as I remember it! Woohoo!
During the many hours of wait on the day of my Monday appointment, I had a lot of time to talk with my grandmother. I recall her asking on various subjects: "Are you allowed to ...," or "Can you ...," or "Will you be able to ..."
I remember defiantly answering "yes" to all of those questions. At first, she would give me a perplexed look and I would have to clarify: "Yes I can do that, but the doctors say that it is not allowed." And again, "Certainly, but it is not recommended."
Soon, she was rephrasing all of her questions. No longer was my freedom in question... instead, it was my choices or the doctor's recommendations that was in question. It was a good feeling.
Even if you're not being defiant, just changing your perspective can mean a world of difference. Say you technically have fourteen days remaining before you are supposed to go outside without your mask. There's a world of difference between "I can't go outside without my mask" and "I have chosen not to go outside without my mask." The latter implies freedom.
If you still have your freedom, then that's one less thing the cancer has taken away.
As you may recall, I was told not to fly to Michigan for Christmas holiday. I wasn't given a recommendation, I was told not to fly. Well, I want to go. In addition, I don't think it's a stupid decision. If I do get sick, I'm sure I'll pull through fine... it may just be a bit more prolonged and annoying that others may experience. Flying may slightly increase risk of medical trouble, but isn't that life? And I feel like living! Whether that be from living like a normal human or by taking chances...
"Get busy living, or get busy dying."
On a side note, I had a Snickers today... it was the first food post-BMT that tasted 100% as good as I remember it! Woohoo!
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...
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