[10:43pm]
I got a new niece! Mariska was born today in the early afternoon, and everyone is fine and happy. I haven't seen her yet, but I plan to get a ride down to Santa Cruz for a day visit on Friday -- to hell with the 20 mile radius, I feel quite nominal.
As for me, well I've just been playing my video games... I'm trying to waste as much time as possible -- I can't wait to get this started! It's like when you're a kid and you're waiting for Christmas... a valid strategy is to sleep excessively :P
To bad I can't sleep to well. It's funny: most people look at their alarm clock with a sense of dread in the morning. I do as well, but in a way that is totally different than you'd expect. One typically says, "Oh man, it's almost 7:00am -- I only have ten more minutes of sleep." I, on the other hand, say, "Oh man, it's almost 7:00am -- last time I was awake was at 6:40am.. it's only been 10 minutes, so little time has passed."
Oh well. It's mostly the mattress, I think. Perhaps I should score a Tempurpedic. But those hospital beds were darn comfortable... I wonder how I'll sleep there... So much anticipation!
Showing posts with label family. Show all posts
Showing posts with label family. Show all posts
Thursday, October 23, 2008
Sunday, October 19, 2008
[10-19-08] Living in Stanford Area!
[6:59pm]
I just got my laptop connected to the wireless internet in my new (temporary) home! Yup, I am currently living in the Stanford area!
As I started unpacking my stuff, I realized that I had forgotten a few absolutely necessary things:
1: PC Primary Power Cable
2: Stereo Mini (male to male) Cable
3: My CD Wallet
*sigh* I always do this. Oh well, fortunately, I can salvage the PC primary power cable from my laptop power supply for the time being. Also, I can use a headphone with a female to female stereo coupler... so, I will be able to play my xbox. *whew* Gotta love emergency audio adapters!
Still, it would be nice to have everything in order.
See, I've been making a list and constructing my 6-week mandatory-item nomad pack. What do I need to survive in any environment for a period of 6 weeks? Not surprisingly, technology is a large part of it.
Anyhow, I've got a lot of work to do before I can fall into blissful slumber. (As you can probably guess, getting my computer up and running on the internet is the first item in that list) :P
Ta ta for now! Chemo in two days! Woohoo!
I just got my laptop connected to the wireless internet in my new (temporary) home! Yup, I am currently living in the Stanford area!
As I started unpacking my stuff, I realized that I had forgotten a few absolutely necessary things:
1: PC Primary Power Cable
2: Stereo Mini (male to male) Cable
3: My CD Wallet
*sigh* I always do this. Oh well, fortunately, I can salvage the PC primary power cable from my laptop power supply for the time being. Also, I can use a headphone with a female to female stereo coupler... so, I will be able to play my xbox. *whew* Gotta love emergency audio adapters!
Still, it would be nice to have everything in order.
See, I've been making a list and constructing my 6-week mandatory-item nomad pack. What do I need to survive in any environment for a period of 6 weeks? Not surprisingly, technology is a large part of it.
Anyhow, I've got a lot of work to do before I can fall into blissful slumber. (As you can probably guess, getting my computer up and running on the internet is the first item in that list) :P
Ta ta for now! Chemo in two days! Woohoo!
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...
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.
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.
Tuesday, August 19, 2008
[8-19-08] Getting Settled.
[12:06pm]
Now's the part where I get settled into my new home! First things first: establish the command center (i.e. computer + desk). It's actually a pretty big deal, since I have waaaay too many peripherals. Also, the desk was located up in the office, so you had a pregnant woman and a chemo kid lugging this desk through the brush. But we made it!
So, I guess I'll stay here for a month or so, then head to Stanford. Then, who knows? I feel like somewhat of a nomad. Yet another good reason to live minimally. The strangest part is being out of school: what am I supposed to do with my spare time? When I was in the hospital, that was one thing. In a hospital, you're expected to slack off. Now, in my new home, I get that all too familiar feeling to start accomplishing things. Maybe I'll beef up on my coding skills a bit. Or...play xbox 360 games until my eyes fall out.
On the cancer front, things are going well. The worst passes as you get out of the hospital. All that lingers now is a real lack of stamina and the feeling that I ate (and swallowed) several pennies. An odd feeling.
[3:51pm]
Grades are in! I got an A- in Technical Writing! Woohoo!
Now's the part where I get settled into my new home! First things first: establish the command center (i.e. computer + desk). It's actually a pretty big deal, since I have waaaay too many peripherals. Also, the desk was located up in the office, so you had a pregnant woman and a chemo kid lugging this desk through the brush. But we made it!
So, I guess I'll stay here for a month or so, then head to Stanford. Then, who knows? I feel like somewhat of a nomad. Yet another good reason to live minimally. The strangest part is being out of school: what am I supposed to do with my spare time? When I was in the hospital, that was one thing. In a hospital, you're expected to slack off. Now, in my new home, I get that all too familiar feeling to start accomplishing things. Maybe I'll beef up on my coding skills a bit. Or...play xbox 360 games until my eyes fall out.
On the cancer front, things are going well. The worst passes as you get out of the hospital. All that lingers now is a real lack of stamina and the feeling that I ate (and swallowed) several pennies. An odd feeling.
[3:51pm]
Grades are in! I got an A- in Technical Writing! Woohoo!
Saturday, August 16, 2008
[8-16-08] ICE, Day Three
[9:21am]
Got a good night's sleep. So nice. It's hard to get to sleep in a strange place, on a strange bed, with random people waking you up at random times of the night. Sleeping pills are necessary to get a full night's sleep, at least for me.
Anyhow, I did the normal routine. Since I have to water-protect my port, I wash my hair in the sink. And, I just could not believe the amount that came out! It looks like I'm going to lose my 10 day bet -- it's going to be like 3 or 4 more days, I believe. I already have bald streaks on the side of my head. Interesting to note where the hair is first lost.
Also, they've been giving me some "magic mouthwash" for some of the sores I have under the tongue. It's not all that bad, just really annoying. Makes saying a few words and eating Cheetos a little painful. So, even though my case is about as mild as it gets, I always take the path of least pain. Apparently, it's due to a low white blood count (though mine is not *that* low).
The downside to the mouthwash, is that it makes me feel a bit queasy for an hour or so afterwards.
[10:45am]
It seems I've been talking so much about events, that I haven't said much on how I am feeling about all this. The cancer, the hospitalization, the hair loss, the chemo, withdrawal from school, scary BMT, moving in with family, and general emotional state. So, I thought I'd say a few words about it. In general, I'm doing absolutely fine with all this. Mood is good. Don't worry, I'll be sure to complain or be pessimistic when the time comes. But, right now, it's all good.
Specifically,
The Cancer: I'm confident that ICE will show enough progress after 2 or 4 cycles to send me to the BMT program. My belief that 2 cycles will get it done is going up with time. I believe the BMT will send me to a remission, with a decent chance of a permanent cure (although I recognize the chance of a relapse or secondary cancer). Also, I am fairly certain that I will have some long-term side-effects maybe 10 years or so down the road. But I am also sure that they can be handled with proper healthy behavior, and medical upkeep.
The BMT: Looking forward to it; it should be interesting. I know it will be totally tough, and I'll be pretty decrepit at times... but, I expect the BMT to the coup de grâce for the evil tumor, and that's exciting. Liz told me not to use the word "burden," so instead I will say: "I want to minimize how much of a workload I am to my family through all of this. I totally recognize that this is tough on everyone, and don't want anyone to feel any obligation whatsoever."
Hair Loss: It sucks, but I'm cool with it. Kinda neat, in a way. But, then again, it's like wearing a hospital gown: an indication to the world that you are sick. I don't like that.
Hospital: Things are great here. I do feel a bit trapped, but with the internet, and movies, and my book, I'm pretty well entertained. Food quality and quantity needs a little boost though. I'm starting to get into this novel, so I look forward to getting totally lost in a fantasy series (thanks, Liz!).
Chemo: Starting to feel the effects of the chemo again; getting flashbacks to the harder parts of the Stanford V. But, still, I'm handling it extremely well. So, I'm not bothered much by it...yet.
Withdrawal from School: I'm more bothered by this, than by anything else. School represents moving forward in life. Not only that, but redemption. Having to withdraw previously, and basically wasting away my potential for three years has really taught me the negative aspects of myself. Doing well, being productive, and generally being positive to those around you are what it's all about. That's why graduation from Berkeley is so profoundly important to me. I know that a bit hard on myself, but that's the plain truth of how I feel.
Staying in school (finishing fall and summer sessions) while undergoing chemo and cancer treatment has been a personal victory for me. I'm proud of that. Having to withdraw due to cancer evens the score. It is a battle. :P
Moving in with family: Same "workload" considerations as before. I'm really looking forward to their company. Just yet another example of how awesome my family is. I mean, I think most people envision long time spent with their family with some amount of dread. But we're a tightly knit group. We're friends; we hang out for no occasion whatsoever. Awesome and special. The downside is that I'll see Liz less frequently.
So, that's the status report. All in all, things are quite good.
[11:40am]
Heh heh. I just ordered more Japanese food. I love spoiling myself... might as well. :)
[12:51pm]
Food Delivery Fiasco: About ten minutes after I ordered the Japanese food, I was sent to have my pulmonary function test. I thought it would be a short affair, but it actually took about 25 minutes. But priorities, you know? A PFT is *way* more important than Japanese food. Anyhow, so about 20 minutes into the PFT, my nurse runs up to the room I am in and says: "Did you order take-out? There's a guy with takeout waiting next to your room." I asked the nurse if he could take some money out of my wallet, left in the room. They nice guy just asked me if I had enough money, then said I could pay him back. Super cool of him. I imagine the delivery guy was quite upset, though. He was tipped well, but I don't believe they'll be delivering to my room again. [Edit: Actually, the nurse thought my tip was too big. Gave him a 3 dollar tip on a 22 dollar meal -- ouch!] :P
On a good note, it looks like I've passed the PFT with flying colors. So, nothing's stopping me from Stanford BMT!
Oh, and when I was sorting through my delivery, a food-service person came in because I forgot to turn in my menu. I was standing next to the window when she asked, "Do you know where the patient is?" I thought that was awesome.
[2:06pm]
Chemo is starting a little late today. Time for a little pre-chemo Ativan nap.
[12:35pm]
Just shaved the last of my facial hair with my fingers. Looks like I was short on the bet by about 8 days -- I've definitely hit the 50% marker. Good night, hair.
Got a good night's sleep. So nice. It's hard to get to sleep in a strange place, on a strange bed, with random people waking you up at random times of the night. Sleeping pills are necessary to get a full night's sleep, at least for me.
Anyhow, I did the normal routine. Since I have to water-protect my port, I wash my hair in the sink. And, I just could not believe the amount that came out! It looks like I'm going to lose my 10 day bet -- it's going to be like 3 or 4 more days, I believe. I already have bald streaks on the side of my head. Interesting to note where the hair is first lost.
Also, they've been giving me some "magic mouthwash" for some of the sores I have under the tongue. It's not all that bad, just really annoying. Makes saying a few words and eating Cheetos a little painful. So, even though my case is about as mild as it gets, I always take the path of least pain. Apparently, it's due to a low white blood count (though mine is not *that* low).
The downside to the mouthwash, is that it makes me feel a bit queasy for an hour or so afterwards.
[10:45am]
It seems I've been talking so much about events, that I haven't said much on how I am feeling about all this. The cancer, the hospitalization, the hair loss, the chemo, withdrawal from school, scary BMT, moving in with family, and general emotional state. So, I thought I'd say a few words about it. In general, I'm doing absolutely fine with all this. Mood is good. Don't worry, I'll be sure to complain or be pessimistic when the time comes. But, right now, it's all good.
Specifically,
The Cancer: I'm confident that ICE will show enough progress after 2 or 4 cycles to send me to the BMT program. My belief that 2 cycles will get it done is going up with time. I believe the BMT will send me to a remission, with a decent chance of a permanent cure (although I recognize the chance of a relapse or secondary cancer). Also, I am fairly certain that I will have some long-term side-effects maybe 10 years or so down the road. But I am also sure that they can be handled with proper healthy behavior, and medical upkeep.
The BMT: Looking forward to it; it should be interesting. I know it will be totally tough, and I'll be pretty decrepit at times... but, I expect the BMT to the coup de grâce for the evil tumor, and that's exciting. Liz told me not to use the word "burden," so instead I will say: "I want to minimize how much of a workload I am to my family through all of this. I totally recognize that this is tough on everyone, and don't want anyone to feel any obligation whatsoever."
Hair Loss: It sucks, but I'm cool with it. Kinda neat, in a way. But, then again, it's like wearing a hospital gown: an indication to the world that you are sick. I don't like that.
Hospital: Things are great here. I do feel a bit trapped, but with the internet, and movies, and my book, I'm pretty well entertained. Food quality and quantity needs a little boost though. I'm starting to get into this novel, so I look forward to getting totally lost in a fantasy series (thanks, Liz!).
Chemo: Starting to feel the effects of the chemo again; getting flashbacks to the harder parts of the Stanford V. But, still, I'm handling it extremely well. So, I'm not bothered much by it...yet.
Withdrawal from School: I'm more bothered by this, than by anything else. School represents moving forward in life. Not only that, but redemption. Having to withdraw previously, and basically wasting away my potential for three years has really taught me the negative aspects of myself. Doing well, being productive, and generally being positive to those around you are what it's all about. That's why graduation from Berkeley is so profoundly important to me. I know that a bit hard on myself, but that's the plain truth of how I feel.
Staying in school (finishing fall and summer sessions) while undergoing chemo and cancer treatment has been a personal victory for me. I'm proud of that. Having to withdraw due to cancer evens the score. It is a battle. :P
Moving in with family: Same "workload" considerations as before. I'm really looking forward to their company. Just yet another example of how awesome my family is. I mean, I think most people envision long time spent with their family with some amount of dread. But we're a tightly knit group. We're friends; we hang out for no occasion whatsoever. Awesome and special. The downside is that I'll see Liz less frequently.
So, that's the status report. All in all, things are quite good.
[11:40am]
Heh heh. I just ordered more Japanese food. I love spoiling myself... might as well. :)
[12:51pm]
Food Delivery Fiasco: About ten minutes after I ordered the Japanese food, I was sent to have my pulmonary function test. I thought it would be a short affair, but it actually took about 25 minutes. But priorities, you know? A PFT is *way* more important than Japanese food. Anyhow, so about 20 minutes into the PFT, my nurse runs up to the room I am in and says: "Did you order take-out? There's a guy with takeout waiting next to your room." I asked the nurse if he could take some money out of my wallet, left in the room. They nice guy just asked me if I had enough money, then said I could pay him back. Super cool of him. I imagine the delivery guy was quite upset, though. He was tipped well, but I don't believe they'll be delivering to my room again. [Edit: Actually, the nurse thought my tip was too big. Gave him a 3 dollar tip on a 22 dollar meal -- ouch!] :P
On a good note, it looks like I've passed the PFT with flying colors. So, nothing's stopping me from Stanford BMT!
Oh, and when I was sorting through my delivery, a food-service person came in because I forgot to turn in my menu. I was standing next to the window when she asked, "Do you know where the patient is?" I thought that was awesome.
[2:06pm]
Chemo is starting a little late today. Time for a little pre-chemo Ativan nap.
[12:35pm]
Just shaved the last of my facial hair with my fingers. Looks like I was short on the bet by about 8 days -- I've definitely hit the 50% marker. Good night, hair.
Saturday, August 9, 2008
[8-09-08] Stanford BMT Appt.
[10:06am]
Now to say a few words about the Friday appointment: crazy, overwhelming, emotionally draining, and fascinating. At first, I thought that the BMT was a pretty big deal. Then, with a bit more research, I realized that it was a really big deal. Now, after this last appointment, I realize that it is a tremendously HUGE and immense life-changing ordeal!
I'll begin with the day before the appointment...
After my final presentation, and my sister's kind words on my last blog entry, I was struck with the desire to hang out with mi familia. It made sense: I had to work on my final term paper, but we would all be heading to Stanford on Friday, so I could just return to Berkeley then. A quick, one day vacation.
It was really awesome that Jen picked me up -- we basically talked the whole drive to Santa Cruz about all sorts of things. It was fun. Then, upon hearing that I was in the car, Dan called and asked Jen: "Yes, but what about beer? Should I get beer?" Dan's a guuuuud boooi. :)
When we arrived, not only was beer on the agenda, I found Corralitos Meat Market sausages and hanging tender on the kitchen counter. I was truly stoked! I know it must mean I'm simple or something, but this formula will ALWAYS work: beer + meat = happy. It has never failed. Hmm, now that I think about it, in many ways, I am simple-folk. I like that. Makes things easier.
Anyways, to my surprise, Jen said: "Why don't you guys go out and get a pitcher or something?" A rare recommendation. Dutifully, we obliged her. When I commented to Dan about how unique this this explicit (with plural, implied) pitcher permission was, he commented: "Well, it's not like it took having terminal cancer to get her to give it." We laughed. [Note to the casual observer: Dan loves Jen more than the world, and he is not belittling my condition. He has an ironic sense of humor that spits in face of convention and mocks the notion of "politically correct." I love it -- he makes me laugh more than anyone else.]
After a few pitchers, Dan commented about how he thought that I wouldn't be able to drink after my first ICE treatment. I expected the same. He then said: "Well, I'm glad we were able to pull this one from the Devil's teeth." That's such a great expression. We then proceeded to get drunk.
That night, for the first time, I experienced the dreadful "neupogen bone pain" that I've heard so much about. It was so annoying! When I stood up, my right knee felt better. The *instant* I lied down, it started to hurt, internally. It made sleep impossible. So strange.
The next day, Barbara, Jen and I got in the car and headed to Stanford. The first appointment, at 11:30am, was with the social worker.
11:30am: The Social Worker.
She was a friendly young woman with an upbeat and cheery disposition. Very disarming. She asked some simple questions at first, but began to probe deeper until Barbara (very wisely) excused herself to allow us to have a private discussion. It was then that she became a savage: tearing through the meat of my emotional and psychological past until I remained little more than a stack of discarded bones on the linoleum floor. She wanted every last detail. Her notes scribbled my most intimate fears, weakest moments, and shame. [I understand, though. She was nice, and she needed to assess my psychological durability.] When Jen and Barbara returned, I was visibly shaken.
She also talked about the Leukemia and Lymphoma Society. Apparently, they are willing to re-reimburse up to $500 for travel and parking expenses to Stanford. I found it profoundly strange! I'm not supposed to be on the receiving end of that charity!! Ever since my diagnosis, I made it a routine habit to deposit all of my available quarters into those little "quarter-collecting" posters with a picture of a kid on it. I'm not that kid!! Yet more irony. At the Korean BBQ place that I frequent, my spicy chicken would cost exactly $6.50. That means, each time, I spend $7.00 and deposit two quarters into the poster. Next time, I'm going to spend $6.00, and pay for the remainder with two quarters out of the poster. I mean, at this point, it seems sorta silly to put those quarters in the cardboard -- kinda like me trying to deduct donations to the "Austin Spicy Chicken Charity" on my tax return. Hmm, now that I think about it, for each trip to Stanford the LLS buys me a spicy chicken. Nice!
1:30pm: The Doctor.
There were four things that I wanted to hear from the doctor: 1> Radiation was part of the game-plan, 2> Event-free-survival was around Northwestern's 80%, 3> that Stanford was undoubtedly superior to everyone else in the whole world for the treatment of Hodgkin's lymphoma, and 4> Whatever questions Barbara asked, the doctor would be able to handle. She performed with flying colors. I especially liked the part where Barbara handed her the Northwestern study. She immersed herself into the details of the study, noted the findings, and commented on them. She kept the study after the appointment was over. I like having an academic (assistant professor) for a doctor.
Then, the doctor spent some more time detailing the game-plan. I'll save the details for tomorrow's post. Nevertheless, she wanted to stress that it was going to be HARD! I'll be covered with mouth-sores, unable to eat for a time, my GI tract will turn to mush, diarrhea, constipation, vomiting, pain, infertility, 6-9months recovery, etc, etc, etc... It's laughable that I thought, even for the slightest moment, that school was even a remote possibility through all of this. Indeed, when my school counselors learn of the BMT, they ask: "So, will you be taking a reduced course load through all of this?" They had no idea. And apparently, neither did I.
The good thing, is that we were all satisfied that Stanford BMT was a damn good place to be. So, we won't be needing to go to Northwestern.
3:00pm: The Nurse.
The last appointment was with the nurse scheduler/liason. Her role was to facilitate communications and scheduling between myself, my local oncologist/radiologist, and Stanford BMT. She handed me a *huge* folder with a copy of the "Autologous BMT Patient Guide," and was positively thrilled when I promptly told her that I already read the whole thing online. That made her job easier. So, instead of talking about what I already knew, I tried to spend some time convincing her to be highly aggressive (low interval) between treatments. In and out: I want no period of time to exist where I go for more than two weeks without chemo or radiation. Two steps forward, one step back. Not vice versa. I did my best, but it looks like there might be a period of 3-4 weeks with no treatment.
Then things went sour.
She began to talk about some required tests that needed to be performed before I be admitted inpatient.
I knew exactly what she was getting at, and I didn't like it one bit. At this point, the color drained from my face, and I could feel my pulse jump. My palms began to sweat, and I felt that "fight-or-flight" response. I remember at being amazed at my drastic physiological response to something that had not yet been said.
At that point, I wanted to choke her. Anything to keep her from saying IT. I was irrationally angry! I couldn't believe it! I don't get angry! [Note: I would like to apologize to the nurse for thinking such thoughts. Let it be known that I would never do anything like that. I have the greatest respect for her profession, I appreciate what she is doing for me, and I respect and like her as a person.] I was just regressing to a little raccoon that had been trapped into a corner. It was instinctive reaction.
For the sake of truth and journalistic integrity, I have to further document my feelings regarding those last few words. I was fucking terrified. Yes, that adjective is absolutely mandatory for the precision of that statement. If I were in a court of law, and I was asked "how I felt" in front of Grandmother and my wonderful nieces, I would say: "I was fucking terrified." The omission of that critical adjective would be perjury.
I think that was the first time in my life that I felt fear. I have never, past the age of 7 or so, been so afraid of physical pain that I was pushed to tears. When I was in the office, my eyes were watery and I was actually trying not to cry. A strange feeling. Even now, the fear is so great that I find my eyes starting to glisten with just the recount of this memory. To put this in perspective, I cry an average of about two tears every three years. Granted, this year has been especially tough -- so far I count about 3 or 4 tears in the past six months.
I think I've sufficiently established that the bone marrow biopsy is a painful procedure. Nevertheless, for my own personal catharsis, I will continue to elaborate.
The first time you get a bone marrow biopsy, it is just a necessary procedure. You sign the form, and it gets done without any drama. This is because the nurses know that you have no idea what to expect. The second time you get a bone marrow biopsy, there is a hushed and formal tension about the office. The nurses know that you have received one before, and they know that you know what you are about to be subjected to. That changes things. Is it pity the nurses feel? You get your vitals and bloodwork: "I see you have a biopsy today... Good luck." You get escorted to the doctor's office by another nurse. She looks at your chart and gives you a sympathetic smile. When the doctor is finished talking, he looks down, and with a sad and reluctant tone, says: "It's time for your biopsy." As if kicking puppies were a necessary part to successful oncology. After the procedure is finished, the nurse tries to make small talk by asking the ridiculous question: "Was it easier knowing what to expect? Or harder?" And lastly, the nurse who originally escorted me into the office asks, "How do you feel now that it's over?" The second time is far different than the first.
However, my first biopsy wasn't all that bad. Yes, it was excruciating, but it was nothing like the second. Perhaps it was because he couldn't get through the bone on the first try, and had to try a different area. I do have thick bones. I really don't know why the second time was so much worse. Maybe other cancer patients usually have an easier time with the biopsy. I mean, I've never seen anyone complain this much about a bone marrow biopsy before. Frankly, I think it is absolutely unethical to subject patients to that amount of enduring psychological trauma. Yes, I think we can all agree I'm somewhat traumatized.
I remember the procedure and the pain. I remember my eyes leaking for some reason... they don't do that. I wasn't crying, I couldn't cry -- they were just leaking (2 of 4 tears for the year right there). For the first biopsy, I made the occasional squeaks or grunting sounds. This time, sound was not possible. I remember moments where there was flashes of white. Then I started to vibrate; not shake... vibrate. I felt like an animal at the butcher's going into shock. I remember the nurse putting a comforting hand on my shoulder to ease the trembling. She will never, ever, be able to comprehend how much that meant to me. I am overwhelmed with gratitude for that, even now. This was not a friend, family, or loved one: this was a nurse, a paid employee, who simply conveyed through physical touch, "I know this sucks for you. There, there." She became a permanent friend right then and there.
After it was over, I felt an overwhelming sense of relief and happiness. I was giddy. "Without suffering, there is no happiness." I remember saying to the nurse, "That wasn't so bad." I really have no idea why I said that. Maybe I was trying to convince myself that it wasn't. Maybe I thought that if I did not scream, then it wasn't a 10 on the pain scale. I didn't scream, and I was proud of that. Regardless, the nurse have me a serious look and said, "No, that looked pretty bad."
I don't think I can handle that again. I need to find a doctor who will do a biopsy with morphine, fentanyl, pre-sedation or all of the above. I will go to a ridiculous extent to prevent that sort of pain again.
Back to Stanford BMT. After the nurse mentioned the biopsy, and I tried to argue that "I just got one a week ago," I remember the visibly angry or outraged look on my sister's face. Amidst all the emotion, I remember feeling a lot of love for my sister right there.
I'm drained. I'll write more about the day tomorrow.
Now to say a few words about the Friday appointment: crazy, overwhelming, emotionally draining, and fascinating. At first, I thought that the BMT was a pretty big deal. Then, with a bit more research, I realized that it was a really big deal. Now, after this last appointment, I realize that it is a tremendously HUGE and immense life-changing ordeal!
I'll begin with the day before the appointment...
After my final presentation, and my sister's kind words on my last blog entry, I was struck with the desire to hang out with mi familia. It made sense: I had to work on my final term paper, but we would all be heading to Stanford on Friday, so I could just return to Berkeley then. A quick, one day vacation.
It was really awesome that Jen picked me up -- we basically talked the whole drive to Santa Cruz about all sorts of things. It was fun. Then, upon hearing that I was in the car, Dan called and asked Jen: "Yes, but what about beer? Should I get beer?" Dan's a guuuuud boooi. :)
When we arrived, not only was beer on the agenda, I found Corralitos Meat Market sausages and hanging tender on the kitchen counter. I was truly stoked! I know it must mean I'm simple or something, but this formula will ALWAYS work: beer + meat = happy. It has never failed. Hmm, now that I think about it, in many ways, I am simple-folk. I like that. Makes things easier.
Anyways, to my surprise, Jen said: "Why don't you guys go out and get a pitcher or something?" A rare recommendation. Dutifully, we obliged her. When I commented to Dan about how unique this this explicit (with plural, implied) pitcher permission was, he commented: "Well, it's not like it took having terminal cancer to get her to give it." We laughed. [Note to the casual observer: Dan loves Jen more than the world, and he is not belittling my condition. He has an ironic sense of humor that spits in face of convention and mocks the notion of "politically correct." I love it -- he makes me laugh more than anyone else.]
After a few pitchers, Dan commented about how he thought that I wouldn't be able to drink after my first ICE treatment. I expected the same. He then said: "Well, I'm glad we were able to pull this one from the Devil's teeth." That's such a great expression. We then proceeded to get drunk.
That night, for the first time, I experienced the dreadful "neupogen bone pain" that I've heard so much about. It was so annoying! When I stood up, my right knee felt better. The *instant* I lied down, it started to hurt, internally. It made sleep impossible. So strange.
The next day, Barbara, Jen and I got in the car and headed to Stanford. The first appointment, at 11:30am, was with the social worker.
11:30am: The Social Worker.
She was a friendly young woman with an upbeat and cheery disposition. Very disarming. She asked some simple questions at first, but began to probe deeper until Barbara (very wisely) excused herself to allow us to have a private discussion. It was then that she became a savage: tearing through the meat of my emotional and psychological past until I remained little more than a stack of discarded bones on the linoleum floor. She wanted every last detail. Her notes scribbled my most intimate fears, weakest moments, and shame. [I understand, though. She was nice, and she needed to assess my psychological durability.] When Jen and Barbara returned, I was visibly shaken.
She also talked about the Leukemia and Lymphoma Society. Apparently, they are willing to re-reimburse up to $500 for travel and parking expenses to Stanford. I found it profoundly strange! I'm not supposed to be on the receiving end of that charity!! Ever since my diagnosis, I made it a routine habit to deposit all of my available quarters into those little "quarter-collecting" posters with a picture of a kid on it. I'm not that kid!! Yet more irony. At the Korean BBQ place that I frequent, my spicy chicken would cost exactly $6.50. That means, each time, I spend $7.00 and deposit two quarters into the poster. Next time, I'm going to spend $6.00, and pay for the remainder with two quarters out of the poster. I mean, at this point, it seems sorta silly to put those quarters in the cardboard -- kinda like me trying to deduct donations to the "Austin Spicy Chicken Charity" on my tax return. Hmm, now that I think about it, for each trip to Stanford the LLS buys me a spicy chicken. Nice!
1:30pm: The Doctor.
There were four things that I wanted to hear from the doctor: 1> Radiation was part of the game-plan, 2> Event-free-survival was around Northwestern's 80%, 3> that Stanford was undoubtedly superior to everyone else in the whole world for the treatment of Hodgkin's lymphoma, and 4> Whatever questions Barbara asked, the doctor would be able to handle. She performed with flying colors. I especially liked the part where Barbara handed her the Northwestern study. She immersed herself into the details of the study, noted the findings, and commented on them. She kept the study after the appointment was over. I like having an academic (assistant professor) for a doctor.
Then, the doctor spent some more time detailing the game-plan. I'll save the details for tomorrow's post. Nevertheless, she wanted to stress that it was going to be HARD! I'll be covered with mouth-sores, unable to eat for a time, my GI tract will turn to mush, diarrhea, constipation, vomiting, pain, infertility, 6-9months recovery, etc, etc, etc... It's laughable that I thought, even for the slightest moment, that school was even a remote possibility through all of this. Indeed, when my school counselors learn of the BMT, they ask: "So, will you be taking a reduced course load through all of this?" They had no idea. And apparently, neither did I.
The good thing, is that we were all satisfied that Stanford BMT was a damn good place to be. So, we won't be needing to go to Northwestern.
3:00pm: The Nurse.
The last appointment was with the nurse scheduler/liason. Her role was to facilitate communications and scheduling between myself, my local oncologist/radiologist, and Stanford BMT. She handed me a *huge* folder with a copy of the "Autologous BMT Patient Guide," and was positively thrilled when I promptly told her that I already read the whole thing online. That made her job easier. So, instead of talking about what I already knew, I tried to spend some time convincing her to be highly aggressive (low interval) between treatments. In and out: I want no period of time to exist where I go for more than two weeks without chemo or radiation. Two steps forward, one step back. Not vice versa. I did my best, but it looks like there might be a period of 3-4 weeks with no treatment.
Then things went sour.
She began to talk about some required tests that needed to be performed before I be admitted inpatient.
"There's a pulmonary function test... that's easy. Then there's the MUGA scan... that's relatively easy..."
I knew exactly what she was getting at, and I didn't like it one bit. At this point, the color drained from my face, and I could feel my pulse jump. My palms began to sweat, and I felt that "fight-or-flight" response. I remember at being amazed at my drastic physiological response to something that had not yet been said.
"The pet-CT scan... you're familiar with that. Also pretty easy..."
At that point, I wanted to choke her. Anything to keep her from saying IT. I was irrationally angry! I couldn't believe it! I don't get angry! [Note: I would like to apologize to the nurse for thinking such thoughts. Let it be known that I would never do anything like that. I have the greatest respect for her profession, I appreciate what she is doing for me, and I respect and like her as a person.] I was just regressing to a little raccoon that had been trapped into a corner. It was instinctive reaction.
"And last, there's the bone marrow biopsy. That's hard."
For the sake of truth and journalistic integrity, I have to further document my feelings regarding those last few words. I was fucking terrified. Yes, that adjective is absolutely mandatory for the precision of that statement. If I were in a court of law, and I was asked "how I felt" in front of Grandmother and my wonderful nieces, I would say: "I was fucking terrified." The omission of that critical adjective would be perjury.
I think that was the first time in my life that I felt fear. I have never, past the age of 7 or so, been so afraid of physical pain that I was pushed to tears. When I was in the office, my eyes were watery and I was actually trying not to cry. A strange feeling. Even now, the fear is so great that I find my eyes starting to glisten with just the recount of this memory. To put this in perspective, I cry an average of about two tears every three years. Granted, this year has been especially tough -- so far I count about 3 or 4 tears in the past six months.
I think I've sufficiently established that the bone marrow biopsy is a painful procedure. Nevertheless, for my own personal catharsis, I will continue to elaborate.
The first time you get a bone marrow biopsy, it is just a necessary procedure. You sign the form, and it gets done without any drama. This is because the nurses know that you have no idea what to expect. The second time you get a bone marrow biopsy, there is a hushed and formal tension about the office. The nurses know that you have received one before, and they know that you know what you are about to be subjected to. That changes things. Is it pity the nurses feel? You get your vitals and bloodwork: "I see you have a biopsy today... Good luck." You get escorted to the doctor's office by another nurse. She looks at your chart and gives you a sympathetic smile. When the doctor is finished talking, he looks down, and with a sad and reluctant tone, says: "It's time for your biopsy." As if kicking puppies were a necessary part to successful oncology. After the procedure is finished, the nurse tries to make small talk by asking the ridiculous question: "Was it easier knowing what to expect? Or harder?" And lastly, the nurse who originally escorted me into the office asks, "How do you feel now that it's over?" The second time is far different than the first.
However, my first biopsy wasn't all that bad. Yes, it was excruciating, but it was nothing like the second. Perhaps it was because he couldn't get through the bone on the first try, and had to try a different area. I do have thick bones. I really don't know why the second time was so much worse. Maybe other cancer patients usually have an easier time with the biopsy. I mean, I've never seen anyone complain this much about a bone marrow biopsy before. Frankly, I think it is absolutely unethical to subject patients to that amount of enduring psychological trauma. Yes, I think we can all agree I'm somewhat traumatized.
I remember the procedure and the pain. I remember my eyes leaking for some reason... they don't do that. I wasn't crying, I couldn't cry -- they were just leaking (2 of 4 tears for the year right there). For the first biopsy, I made the occasional squeaks or grunting sounds. This time, sound was not possible. I remember moments where there was flashes of white. Then I started to vibrate; not shake... vibrate. I felt like an animal at the butcher's going into shock. I remember the nurse putting a comforting hand on my shoulder to ease the trembling. She will never, ever, be able to comprehend how much that meant to me. I am overwhelmed with gratitude for that, even now. This was not a friend, family, or loved one: this was a nurse, a paid employee, who simply conveyed through physical touch, "I know this sucks for you. There, there." She became a permanent friend right then and there.
After it was over, I felt an overwhelming sense of relief and happiness. I was giddy. "Without suffering, there is no happiness." I remember saying to the nurse, "That wasn't so bad." I really have no idea why I said that. Maybe I was trying to convince myself that it wasn't. Maybe I thought that if I did not scream, then it wasn't a 10 on the pain scale. I didn't scream, and I was proud of that. Regardless, the nurse have me a serious look and said, "No, that looked pretty bad."
I don't think I can handle that again. I need to find a doctor who will do a biopsy with morphine, fentanyl, pre-sedation or all of the above. I will go to a ridiculous extent to prevent that sort of pain again.
Back to Stanford BMT. After the nurse mentioned the biopsy, and I tried to argue that "I just got one a week ago," I remember the visibly angry or outraged look on my sister's face. Amidst all the emotion, I remember feeling a lot of love for my sister right there.
I'm drained. I'll write more about the day tomorrow.
Thursday, August 7, 2008
[8-07-08] Life... is good!
[12:03pm]
I'm not implying causality or anything, but ever since this Hodgkin's thingy, my quality of life seems to have gone up. Interesting how that works, isn't it?
Take, for example, last night. I had a huge final presentation today that had been bumped up a week early so I could stop attending class early (due to hospitalization on 13th). Was I diligently cramming the material before the impending doom? Nope - I was hanging out with Liz until late at night. Priorities!
Then, I calmly woke up at 5:00am the next morning, had a coffee, and got to work. Calmly I plugged along, not sweating the small stuff, just enjoying the act of creation. In short, I was in the flow. Had I been stressed, concerned about my grade, or anything else, my efforts would have been frantic, and disheveled. Most importantly, it wouldn't be fun anymore. Somehow, I am slowly learning how to enjoy things a bit more -- and that's making all the difference in the world.
I got an A- (my first non-hybrid grade!) on my final 10min presentation, did a great job, and had a good time doing it. I'm willing to wager that, had I studied and crammed all night before, and failed to have fun, that I would've gotten a considerably lesser score.
Then it all comes full circle: is this new perspective a result of the Hodgkin's? Perhaps so. Silver lining indeed. Just for argument's sake, let's take it one step further...
To my friends and family, let me first apologize a bit... I know that me having this disease is a terrible pain and burden to you all; I don't want you to think that I'm belittling that by talking about this "silver lining." But there are some positives...
Come Tuesday, I'm out of school! Normally, this would have me in a frenzy. But now that I think about it, it is a true and genuine vacation. For once in my life, I don't have to worry about future career ambitions, or getting good grades for grad schools, or how I'm wasting away my life. All that is put aside. Just enjoy.
Oh, and what people think? If they're not my friends and family, who cares? Make stupid jokes to random strangers. Assert yourself! Be silly!
And friends and family, most of all! It may not be PC to say, but this whole thing has brought us together! TJ, Mom, and Dad are leaving fun little comments on my blog; we're more connected now. Liz's mom is working in tandem with Barbara, and sending me best wishes with a quilt. And Liz, where just the mention makes me smile... Jen, Dan, and the kids are all being there, together, to do what they can. Taunte Laurie, Taunte Theresa, my aunts, my cousins, all keeping in touch and wishing me well. I've never felt so connected in my life! Thank you all.
So hell yeah, I'm happy! And if it helps, consider me getting chemo with a smile on my face -- because I'll be wearing one. "Nothing like a little Cisplatin in the morning to take the edge off."
I'm not implying causality or anything, but ever since this Hodgkin's thingy, my quality of life seems to have gone up. Interesting how that works, isn't it?
Take, for example, last night. I had a huge final presentation today that had been bumped up a week early so I could stop attending class early (due to hospitalization on 13th). Was I diligently cramming the material before the impending doom? Nope - I was hanging out with Liz until late at night. Priorities!
Then, I calmly woke up at 5:00am the next morning, had a coffee, and got to work. Calmly I plugged along, not sweating the small stuff, just enjoying the act of creation. In short, I was in the flow. Had I been stressed, concerned about my grade, or anything else, my efforts would have been frantic, and disheveled. Most importantly, it wouldn't be fun anymore. Somehow, I am slowly learning how to enjoy things a bit more -- and that's making all the difference in the world.
I got an A- (my first non-hybrid grade!) on my final 10min presentation, did a great job, and had a good time doing it. I'm willing to wager that, had I studied and crammed all night before, and failed to have fun, that I would've gotten a considerably lesser score.
Then it all comes full circle: is this new perspective a result of the Hodgkin's? Perhaps so. Silver lining indeed. Just for argument's sake, let's take it one step further...
To my friends and family, let me first apologize a bit... I know that me having this disease is a terrible pain and burden to you all; I don't want you to think that I'm belittling that by talking about this "silver lining." But there are some positives...
Come Tuesday, I'm out of school! Normally, this would have me in a frenzy. But now that I think about it, it is a true and genuine vacation. For once in my life, I don't have to worry about future career ambitions, or getting good grades for grad schools, or how I'm wasting away my life. All that is put aside. Just enjoy.
Oh, and what people think? If they're not my friends and family, who cares? Make stupid jokes to random strangers. Assert yourself! Be silly!
And friends and family, most of all! It may not be PC to say, but this whole thing has brought us together! TJ, Mom, and Dad are leaving fun little comments on my blog; we're more connected now. Liz's mom is working in tandem with Barbara, and sending me best wishes with a quilt. And Liz, where just the mention makes me smile... Jen, Dan, and the kids are all being there, together, to do what they can. Taunte Laurie, Taunte Theresa, my aunts, my cousins, all keeping in touch and wishing me well. I've never felt so connected in my life! Thank you all.
So hell yeah, I'm happy! And if it helps, consider me getting chemo with a smile on my face -- because I'll be wearing one. "Nothing like a little Cisplatin in the morning to take the edge off."
Friday, August 1, 2008
[8-01-08] Bacon, Bacon, Cancer
[12;44pm]
Really tired this morning, so I slept a bunch. These hospital beds are great! On a normal mattress, I can get about 5 hours before my back starts hurting. On my special mattress, 7 hours. In here, 11 and a half hours!
So nausea doesn't appear to be an issue anymore. They started me on this drug called emend -- that stuff is bad-ass. With these anti-nausea meds, this chemo is a cake-walk... other than getting a bit tired now and then. Oh, and I found out the "super secret privilege" for those in the oncology ward: you can write whatever you want on the menu, and they'll try to make it! Awesome, huh? I hope they have hanging tenders and pepper jack sausages :P But I didn't want to push my luck, so I just ordered a bunch of bacon.
[6:00pm]
Yawn, just woke up again. Now am I just being lazy, or is it the chemo? I vote chemo, because then it isn't my fault! Other than that, it's been a pretty good day. They started the cisplatin about an hour ago, and no nausea yet! So I think adding the emend made a big difference.
I keep telling the nurses and whatnot about my term paper, and yet I haven't really worked on it. It's hard to care about stuff in that "other" world. This is my world now, a world of tubes and chemo, and repetitive (and extremely annoying) beeping sounds, a world of friendly nurses who not only give you the medicine, they give you some good company. Where does a term paper fit in to this world? In fighting for my life, of what importance is technical writing? Oh well, once I leave the hospital, I'm sure I'll be able to return to that world and finish the paper.
But there's a point to all this. When I was first diagnosed, I didn't want to be "cancer boy." I want to be "Austin, the lazy UC Berkeley student", or "Austin, the musician", or "Austin, the computer geek." But cancer? What an ugly thing: cancer. Cancer isn't attractive, or something to be proud of. And I certainly don't think I'm brave or courageous for doing something anyone in my situation would do. I don't want to identify with cancer. I want to be me. So, back then, I simply got chemo, went to school, and pretended everything was fine.
It worked, for the most part. And that was good, because school propelled me forward. It was a positive distraction, and something I could be proud of. But now, the game has changed a bit. Things have gotten more serious, and there's really no way to hide the fact that you have cancer when you're sitting in a hospital bed with tubes attached 24/7. As for school, my month in Stanford will make that impossible. Nope, no way to hide it. I am "cancer boy" now.
Even this blog will attest to that.
But there's an upside. I'm so amazed at the level of support I received from everyone -- it seems I'm loved. And this is a little vacation for me. I mean, I get fed three times a day, I get to slack on the internet all day, read the books Liz got for me, or watch the 1TB of movies Barbara downloaded for me, or work on my *ahem*midtermpaper. I can't be bored, and despite the situation, everything's pretty low-stress.
This whole thing has allowed me to step back and look at my life. Re-evaluate my priorities and whatnot. If I could do anything in the world, right now, what would I want to do? Where would I want to go? In addition, the lack of deadlines, or career ambition, or financial anxiety... all that's been funneled into a drive to beat this. Fighting cancer is swell meditation. It's probably healthy.
Really tired this morning, so I slept a bunch. These hospital beds are great! On a normal mattress, I can get about 5 hours before my back starts hurting. On my special mattress, 7 hours. In here, 11 and a half hours!
So nausea doesn't appear to be an issue anymore. They started me on this drug called emend -- that stuff is bad-ass. With these anti-nausea meds, this chemo is a cake-walk... other than getting a bit tired now and then. Oh, and I found out the "super secret privilege" for those in the oncology ward: you can write whatever you want on the menu, and they'll try to make it! Awesome, huh? I hope they have hanging tenders and pepper jack sausages :P But I didn't want to push my luck, so I just ordered a bunch of bacon.
[6:00pm]
Yawn, just woke up again. Now am I just being lazy, or is it the chemo? I vote chemo, because then it isn't my fault! Other than that, it's been a pretty good day. They started the cisplatin about an hour ago, and no nausea yet! So I think adding the emend made a big difference.
I keep telling the nurses and whatnot about my term paper, and yet I haven't really worked on it. It's hard to care about stuff in that "other" world. This is my world now, a world of tubes and chemo, and repetitive (and extremely annoying) beeping sounds, a world of friendly nurses who not only give you the medicine, they give you some good company. Where does a term paper fit in to this world? In fighting for my life, of what importance is technical writing? Oh well, once I leave the hospital, I'm sure I'll be able to return to that world and finish the paper.
But there's a point to all this. When I was first diagnosed, I didn't want to be "cancer boy." I want to be "Austin, the lazy UC Berkeley student", or "Austin, the musician", or "Austin, the computer geek." But cancer? What an ugly thing: cancer. Cancer isn't attractive, or something to be proud of. And I certainly don't think I'm brave or courageous for doing something anyone in my situation would do. I don't want to identify with cancer. I want to be me. So, back then, I simply got chemo, went to school, and pretended everything was fine.
It worked, for the most part. And that was good, because school propelled me forward. It was a positive distraction, and something I could be proud of. But now, the game has changed a bit. Things have gotten more serious, and there's really no way to hide the fact that you have cancer when you're sitting in a hospital bed with tubes attached 24/7. As for school, my month in Stanford will make that impossible. Nope, no way to hide it. I am "cancer boy" now.
Even this blog will attest to that.
But there's an upside. I'm so amazed at the level of support I received from everyone -- it seems I'm loved. And this is a little vacation for me. I mean, I get fed three times a day, I get to slack on the internet all day, read the books Liz got for me, or watch the 1TB of movies Barbara downloaded for me, or work on my *ahem*midtermpaper. I can't be bored, and despite the situation, everything's pretty low-stress.
This whole thing has allowed me to step back and look at my life. Re-evaluate my priorities and whatnot. If I could do anything in the world, right now, what would I want to do? Where would I want to go? In addition, the lack of deadlines, or career ambition, or financial anxiety... all that's been funneled into a drive to beat this. Fighting cancer is swell meditation. It's probably healthy.
Tuesday, July 29, 2008
[7-29-08] The Big Plan
[8:51am]
Today is the big day! To say I am anxious is a bit of an understatement. I mean, I find out the big plan today. Will I be able to continue school? How long will I be hospitalized? How long will the treatment last? Is it a harsh treatment? Can I get total-lymphoid irradiation? Pretty pleeeeeeze? All will be answered.
Which is also why my Liz and my family is going to be there. They've prepared some pretty difficult questions, and I'm under the impression that if they are not answered properly, Barbara will ship me off to Chicago. Northwestern University has pretty good experience for people in exactly my situation: non-advanced bulky Hodgkin's with primary induction failure and no previous radiation. Believe it or not, the fact that I have not had any radiation before gives me a huge statistical bump. 83% event-free survival rate! Isn't that grea... wait... How can I be happy with that? True, those are the best odds I've heard for those in my camp. But, those are worse odds than playing Russian roulette with a 6-shooter.
Oh well, when life gives you lemons, you should go to Northwestern and be happy with the odds you're given.
[5:00pm]
Ok, the master plan is in. I think it is a good one and Stanford may work out fine. Ok, everyone is back at the hotel. I'm gonna write more later -- right now is time to drink and have fun.
Today is the big day! To say I am anxious is a bit of an understatement. I mean, I find out the big plan today. Will I be able to continue school? How long will I be hospitalized? How long will the treatment last? Is it a harsh treatment? Can I get total-lymphoid irradiation? Pretty pleeeeeeze? All will be answered.
Which is also why my Liz and my family is going to be there. They've prepared some pretty difficult questions, and I'm under the impression that if they are not answered properly, Barbara will ship me off to Chicago. Northwestern University has pretty good experience for people in exactly my situation: non-advanced bulky Hodgkin's with primary induction failure and no previous radiation. Believe it or not, the fact that I have not had any radiation before gives me a huge statistical bump. 83% event-free survival rate! Isn't that grea... wait... How can I be happy with that? True, those are the best odds I've heard for those in my camp. But, those are worse odds than playing Russian roulette with a 6-shooter.
Oh well, when life gives you lemons, you should go to Northwestern and be happy with the odds you're given.
[5:00pm]
Ok, the master plan is in. I think it is a good one and Stanford may work out fine. Ok, everyone is back at the hotel. I'm gonna write more later -- right now is time to drink and have fun.
Tuesday, February 5, 2008
[2-5-08] Santa Cruz
I went to Santa Cruz a couple of days ago -- we lived it up! It took a couple-few-twelve beers to tell my family, but the news was broken. There was distress -- I felt bad. However, there was much comfort, and I felt immeasurably better. Needless to say, I continued to get drunk.
[11:30am]
I just got the bone marrow biopsy done. They extracted a bone sample and marrow from my hip. It felt weird, like a shock down my legs. It wasn't as bad as I thought it would be, but it still totally sucked.
[8:40pm]
You know, I did some research today. It seems that my symptoms indicate either Hodgkin's (which has a great cure rate), or non-Hodgkin's (which has a 50-70% cure rate). That's pretty good, you know? I'm not doomed.
Mom said non-Hodgkin's was incurable... pa-shaw! I was talking with my family about having a Hodgkin's party if that was the diagnosis... strange as it seems.
[11:30am]
I just got the bone marrow biopsy done. They extracted a bone sample and marrow from my hip. It felt weird, like a shock down my legs. It wasn't as bad as I thought it would be, but it still totally sucked.
[8:40pm]
You know, I did some research today. It seems that my symptoms indicate either Hodgkin's (which has a great cure rate), or non-Hodgkin's (which has a 50-70% cure rate). That's pretty good, you know? I'm not doomed.
Mom said non-Hodgkin's was incurable... pa-shaw! I was talking with my family about having a Hodgkin's party if that was the diagnosis... strange as it seems.
Thursday, January 31, 2008
[1-31-08] It begins...
[1:00am]
Guess the pills the doctor gave me are ineffectual: another night of restless and scattered sleep. I'm getting so little sleep lately, making it impossible to do my new and routine 8am exercise.
Maybe the insomnia is a symptom of the disease.
[7:00am]
Thursday, sweet Thursday! I've been waiting for this day. Today I get a CT scan, and I get a chance to talk to my new oncologist. Even better, is that the scan is before the appointment -- the diagnosis and prognosis will be even more accurate.
[7:30am]
Here I am, at the CT center. I'm excited -- this is going to be so cool. I mean, I designed software to calibrate x-rays: could this device be using some part of my software?
[8:10am]
They take me to this room with a huge, white and doughnut-shaped device. It looks like something from a bad dream out of a science fiction story...
Suddenly, I get a smile on my face, thinking: "Ha ha (teasing), all you people in front of me have to use the lame x-rays. I get to use the bad-ass one!"
The technician put me on the conveyor belt/bed and told me that he was going to inject me with iodine, and that it would cause parts of me to feel warm. So, as I was fed into the machine, the machine started to spin very quickly. I was instructed to hold my breath, and the iodine was automatically injected. I didn't really feel warm, but I was getting a metallic taste in my mouth. Then, all of a sudden, my balls were getting nice and toasty (excuse me for being candid, but that's the truth!). Then, when the technician helped me out, I said: "I'm not going to tell you where I got warm." He looked at me with an expression saying, "Sheesh, I wish all these patients would stop making that joke."
New experiences and interesting stuff. Plus, who says cancer can't have humorous parts?
[11:00am]
I just attended my Artificial Intelligence class, and now I am waiting for my appointment at the Alta Bates hospital. I have bad memories here...
Anyhow, I get to see the oncologist -- how exciting! Now I get to find out a qualified opinion of what this is. It may not even be cancer. If it is cancer, I hope it is Hodgkins (that one has a 5-9% mortality rate!). Apparently, it is the best lymphoma to have.
But even if it is something else, I know I'll be fine. I can just see myself bald and puking all over the place, supporting myself with an arm on the doctor's desk, saying, "Is that all ya got?!?" It'll suck, but that's what makes the victory sweeter.
Buddhism says that without suffering, there will be no happiness. This experience will make my life better in the long run.
Ugh, when I get home, I'm going straight to bed.
[11:30am]
Well, I just got out of the oncologist's office -- the nurse is going to set up a whole mess of appointments: pet scan, heart scan, HIV test, blood work, bone marrow sample, and chest biopsy (big needle + chest = bad). Ack. Then there's the appointments to see the nutritionist and social worker...and that's all before I start chemo.
It's definitely a lymphoma cancer: the doctor said it was "extremely likely, but that there was a non-zero chance that it is something else." Alright... LET'S GET 'ER DONE!
I feel really scared to tell my family... I hope things can be as close to usual/fun as they usually are. I know now that I have to tell them. They have a right to know, even if they don't like the news. I just don't want to be the cause of anguish...especially not now.
I need to take at least 2 technical classes for the semester. Considering the circumstances, I suppose I should drop a class.
Guess the pills the doctor gave me are ineffectual: another night of restless and scattered sleep. I'm getting so little sleep lately, making it impossible to do my new and routine 8am exercise.
Maybe the insomnia is a symptom of the disease.
[7:00am]
Thursday, sweet Thursday! I've been waiting for this day. Today I get a CT scan, and I get a chance to talk to my new oncologist. Even better, is that the scan is before the appointment -- the diagnosis and prognosis will be even more accurate.
[7:30am]
Here I am, at the CT center. I'm excited -- this is going to be so cool. I mean, I designed software to calibrate x-rays: could this device be using some part of my software?
[8:10am]
They take me to this room with a huge, white and doughnut-shaped device. It looks like something from a bad dream out of a science fiction story...
Suddenly, I get a smile on my face, thinking: "Ha ha (teasing), all you people in front of me have to use the lame x-rays. I get to use the bad-ass one!"
The technician put me on the conveyor belt/bed and told me that he was going to inject me with iodine, and that it would cause parts of me to feel warm. So, as I was fed into the machine, the machine started to spin very quickly. I was instructed to hold my breath, and the iodine was automatically injected. I didn't really feel warm, but I was getting a metallic taste in my mouth. Then, all of a sudden, my balls were getting nice and toasty (excuse me for being candid, but that's the truth!). Then, when the technician helped me out, I said: "I'm not going to tell you where I got warm." He looked at me with an expression saying, "Sheesh, I wish all these patients would stop making that joke."
New experiences and interesting stuff. Plus, who says cancer can't have humorous parts?
[11:00am]
I just attended my Artificial Intelligence class, and now I am waiting for my appointment at the Alta Bates hospital. I have bad memories here...
Anyhow, I get to see the oncologist -- how exciting! Now I get to find out a qualified opinion of what this is. It may not even be cancer. If it is cancer, I hope it is Hodgkins (that one has a 5-9% mortality rate!). Apparently, it is the best lymphoma to have.
But even if it is something else, I know I'll be fine. I can just see myself bald and puking all over the place, supporting myself with an arm on the doctor's desk, saying, "Is that all ya got?!?" It'll suck, but that's what makes the victory sweeter.
Buddhism says that without suffering, there will be no happiness. This experience will make my life better in the long run.
Ugh, when I get home, I'm going straight to bed.
[11:30am]
Well, I just got out of the oncologist's office -- the nurse is going to set up a whole mess of appointments: pet scan, heart scan, HIV test, blood work, bone marrow sample, and chest biopsy (big needle + chest = bad). Ack. Then there's the appointments to see the nutritionist and social worker...and that's all before I start chemo.
It's definitely a lymphoma cancer: the doctor said it was "extremely likely, but that there was a non-zero chance that it is something else." Alright... LET'S GET 'ER DONE!
I feel really scared to tell my family... I hope things can be as close to usual/fun as they usually are. I know now that I have to tell them. They have a right to know, even if they don't like the news. I just don't want to be the cause of anguish...especially not now.
I need to take at least 2 technical classes for the semester. Considering the circumstances, I suppose I should drop a class.
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