Today I'm feeling: Pretty good.
Ran 2 miles this morning. Got a late start, so I had to finish early. I got too caught up reading about the Florida primary and the Johann Santana trade (I'm sure that made you very happy, METS2008 -- feel free to share your joy). Ran a shorter distance, but did some wicked hills.
***************************
Still nothing from Dr. C, the specialist. Which is fine -- I'm really not expecting anything. He took a blood test, to see what my antibodies were like (a measure of how well my body can fight infection on its own). I'm guessing they were fine, given that my bone marrow is clean, and my blood work from a week ago was "perfect," according to Dr. R. But it's good to have a baseline. If/when they get low, we can pump them up with medication.
I also don't expect to anything earth-shattering from Dr. C about his presentation of my case to the Oncology Department at the med school. As he has told me Monday, ask 10 oncologists for their take, and you'll get 12 opinions. So my guess is that he's not so much seeking help in determining if the watch and wait is the best approach, but more that he's giving med students a chance to see why the opinion he's already formulated is the best one. I love professors.
********************************
Monday was kind of a rough day. The reality of the situation kind of sank in a little further than it had. I think it came from (1) talking to Dr. C and getting deatils about possible treatments, which we'd only talked about in general terms up until then; (2) being at Yale and seeing patients who were clearly in advanced stages of cancer; and (3) receiving a really negative comment from someone, who let it slip without thinking. Added up, they poked a little hole in my positivity.
Isabel suggested I find a support group, and I'm looking into it. My fear is that the stress of trying to get downtown every Monday night when we have so many other things going on will just not make up for the positive group experience. I want to keep our routine as normal as possible, for as long as we can.
I did, though, find an excellent support group online for NHL patients. I read a bunch of their threads yesterday, and they were very helpful in lots of ways -- helping me understand what to expect, discussing different treatments, just generally encourging one another. There's one thread devoted to everyone telling stories of how they found out about their diagnosis. Some very funny, some infuriating. My own experience wasn't great (particularly since I wrote a 350 page dissertation on giving bad news). So maybe I'll add to that discussion. I learned some things that are worth discussing with the docs.
One kind of cool thing about the members of the group is that each one's signature includes significant dates: when they were diagnosed, when they began and ended certain treatments, how long they've been "dancing with Ned" (NED means they got a test result that said No Evidence of Disease). So all of that is kind of inspiring, and certainly educational.
So that's all for now. I'll post again when I have news, though I still have a couple of topics to get out there to help fill the time. In closing, I'll share a "joke of the day" from one member of the online support group:
What do you call a very short fortune teller who is running away from the police?
A small medium at large.
Wednesday, January 30, 2008
Monday, January 28, 2008
Meeting with the Specialist
I met today with the Lymphoma specialist at Yale, Dr. C. The quick summary is that nothing has changed, but we learned a little more about this lymphoma and about treatment options.
Our big question (and one that I know is out there among my readers) was, "Why should we do this waiting thing? Why not treat it now?"
The answer is that this type of low-grade, less-aggressive lymphoma doesn't repsond well to conventional therapies like chemo and radiation, at least not when it has spread beyond one area. Mine has spread. Radiation seems like it isn't an option anymore for that reason. Chemo might take it out, but the lymphoma would likely come back. So there's no point in taking the time, expense, and potential side effects of a conventional therapy if I'd just have to do it all over again. We can hold off because I'm feeling OK right now, not showing other outward symptoms, and generally living a "normal" life at the moment. And while it's a stage 3, spread to several points in the body, only the lymph node near my hipbone (the one I had biopsied) is really "hot" right now. The others are fairly faint (though present) on the scan.
When it does come time to treat, we can possible try some other therapies like bone marrow/stem cell transplants (that's where my generous brother comes in), which have worked decently. He talked about another interesting therapy that's being used more: a lymph node is removed, then chemo wipes out the lymphoma, and then while the immune system is recovering, they take the lymph node sample and make a vaccine from that, then inject it, forcing the immune system to find a way to fight off the lymphoma when it returns again. Still in trials, but again, looks promising. Interesting stuff.
The final reason for holding off is that once you try a therapy, even if it works temporarily, you usually can't try it a second time, should the lymphoma come back. So not using up a treatment for now means more options later ("more arrows in our quiver" as he put it).
It could be months, or even years, before the lymphoma progresses enough to need treatment. And that's another reason for waiting: when I need a treatment, these treatments might be more advanced, with more likelihood that they'll work. Lymphomas tend to be among the most often studied cancers, so there are lots of possibilities out there that people are working on.
We also asked about the nature of this lymphoma. It is possible, he said, that this could at some point transform from a low-grade to a higher grade, more aggressive lymphoma. That would require different possibilities for treatment. But we'd likely catch it quickly, given that I'll be examined monthly, and if I feel any changes in my health, we can begin exploring what's going on right away with more specific tests.
Dr. C is a professor at Yale Med School, so he's going to discuss my case today with the other oncologists, residents, and interns in the department. One of them may come up with something different for a treatment, but it's not likely that we'll do anything different. As he put it, "If you ask 10 oncologists for an opinion, you'll probably get 12 different answers." So I don't know if, at this point, we'll go for a third opinion. Maybe once it's time to start a treatment, whenever that might be, we'll go to Dana Farber and see if there's something more cutting edge happening. But for now, it seems like we'll kkep on watching and waiting.
**********************************
Before I saw Dr. C, I met with a resident or fellow, who took my medical history and asked me a bunch of questions. Pretty standard questions, that kind of "How are you feeling today?" or "What brings you in here today?" variety.
But what he asked was, "What is concerning you most today?"
I answered, "Well, what concerns me most is that I appear to have cancer."
He kind of stared at me blankly for a few seconds, and then said, "I guess I should have asked that differently."
Yes, Dr. Chuckles, you should have.
***********************************
For those of you who have asked, we enjoyed Rent Saturday night. It featured Anwar Robinson, the cute voice teacher from season 4 of American Idol, in the role of Tom Collins. He was decent, considering it was his first acting job. They all had good voices, though I think the guy who played Roger was great (can't remember his name, but he was the first South African Idol winner. As Randy might say, Dawg, that dude could blow).
I think, though, that if I had seen it when it first came out, I would have been at an age to appreciate it more. The bohemian, anti-establishment message was a little lost of me. I found myself thinking, "You're cold because your landlord padlocked your building because you haven't paid your rent in a year, and now you're squatting in your old apartment? I have a good idea -- get a job."
Ah, how things change when you hit 40, have kids, and get tenure.
(Who was it that said, "The tenured die a thousand small deaths"? Actually, it was me. Like any good professor, I love to quote myself.)
********************************
Dr. C also did another blood test. He's going to call sometime about what his colleagues have to say. So maybe I'll have something more soon. Check back tomorrow, maybe Wednesday.
Our big question (and one that I know is out there among my readers) was, "Why should we do this waiting thing? Why not treat it now?"
The answer is that this type of low-grade, less-aggressive lymphoma doesn't repsond well to conventional therapies like chemo and radiation, at least not when it has spread beyond one area. Mine has spread. Radiation seems like it isn't an option anymore for that reason. Chemo might take it out, but the lymphoma would likely come back. So there's no point in taking the time, expense, and potential side effects of a conventional therapy if I'd just have to do it all over again. We can hold off because I'm feeling OK right now, not showing other outward symptoms, and generally living a "normal" life at the moment. And while it's a stage 3, spread to several points in the body, only the lymph node near my hipbone (the one I had biopsied) is really "hot" right now. The others are fairly faint (though present) on the scan.
When it does come time to treat, we can possible try some other therapies like bone marrow/stem cell transplants (that's where my generous brother comes in), which have worked decently. He talked about another interesting therapy that's being used more: a lymph node is removed, then chemo wipes out the lymphoma, and then while the immune system is recovering, they take the lymph node sample and make a vaccine from that, then inject it, forcing the immune system to find a way to fight off the lymphoma when it returns again. Still in trials, but again, looks promising. Interesting stuff.
The final reason for holding off is that once you try a therapy, even if it works temporarily, you usually can't try it a second time, should the lymphoma come back. So not using up a treatment for now means more options later ("more arrows in our quiver" as he put it).
It could be months, or even years, before the lymphoma progresses enough to need treatment. And that's another reason for waiting: when I need a treatment, these treatments might be more advanced, with more likelihood that they'll work. Lymphomas tend to be among the most often studied cancers, so there are lots of possibilities out there that people are working on.
We also asked about the nature of this lymphoma. It is possible, he said, that this could at some point transform from a low-grade to a higher grade, more aggressive lymphoma. That would require different possibilities for treatment. But we'd likely catch it quickly, given that I'll be examined monthly, and if I feel any changes in my health, we can begin exploring what's going on right away with more specific tests.
Dr. C is a professor at Yale Med School, so he's going to discuss my case today with the other oncologists, residents, and interns in the department. One of them may come up with something different for a treatment, but it's not likely that we'll do anything different. As he put it, "If you ask 10 oncologists for an opinion, you'll probably get 12 different answers." So I don't know if, at this point, we'll go for a third opinion. Maybe once it's time to start a treatment, whenever that might be, we'll go to Dana Farber and see if there's something more cutting edge happening. But for now, it seems like we'll kkep on watching and waiting.
**********************************
Before I saw Dr. C, I met with a resident or fellow, who took my medical history and asked me a bunch of questions. Pretty standard questions, that kind of "How are you feeling today?" or "What brings you in here today?" variety.
But what he asked was, "What is concerning you most today?"
I answered, "Well, what concerns me most is that I appear to have cancer."
He kind of stared at me blankly for a few seconds, and then said, "I guess I should have asked that differently."
Yes, Dr. Chuckles, you should have.
***********************************
For those of you who have asked, we enjoyed Rent Saturday night. It featured Anwar Robinson, the cute voice teacher from season 4 of American Idol, in the role of Tom Collins. He was decent, considering it was his first acting job. They all had good voices, though I think the guy who played Roger was great (can't remember his name, but he was the first South African Idol winner. As Randy might say, Dawg, that dude could blow).
I think, though, that if I had seen it when it first came out, I would have been at an age to appreciate it more. The bohemian, anti-establishment message was a little lost of me. I found myself thinking, "You're cold because your landlord padlocked your building because you haven't paid your rent in a year, and now you're squatting in your old apartment? I have a good idea -- get a job."
Ah, how things change when you hit 40, have kids, and get tenure.
(Who was it that said, "The tenured die a thousand small deaths"? Actually, it was me. Like any good professor, I love to quote myself.)
********************************
Dr. C also did another blood test. He's going to call sometime about what his colleagues have to say. So maybe I'll have something more soon. Check back tomorrow, maybe Wednesday.
Saturday, January 26, 2008
Appointment on Monday
Today I'm feeling: Tired, but good.
Tired because I ran 3.1 miles this morning, the equivelant of a 5K race, and I did hills for about half of it. I'll mostly take it easy today, even try for a nap, hoping a child doesn't wake me or a dog doesn't lick me. But overall, I feel good -- not like someone who's sick.
********************
The lymphoma specialist's office called late yesterday afternoon. I go to see him Monday at 8:00am. I was impressed with how quick that was, and his secretary said he liked to see new patients within a week of getting a referral. I'm assuming I'm also benefiting from the fact that Dr. R used to work with Dr. C, and knows the secretary well, and not that Dr. C is worried and so wants to see me quicly. (Dr. R has already discussed my case with Dr. C by phone, so my guess is that they agree with the waiting approach in general). There may be something new after the meeting, since he'll now get to see the biopsy slides and scan pictures himself. But I'm guessing there won't be too much new to say about the situation.
However, since he's a specialist in lymphoma (Dr. R is a general oncologist), I'm gathering more specific questions about NHL, and follicular lymphoma in particular, that I can ask.
********************
Thanks to Nicole, my friend and colleague, for this helpful description of the low-grade lymphoma paradox:
"Here's how a doctor I know once explained the difference between slow growing
and fast growing cancer --Imagine slow growing cancer is like a Lincoln Continental (say, 1980-ish), and fast growing cancer is like a little, speedy sportscar (you pick). The sports car is easier to knock off the road than the Lincoln, but the Lincoln is MUCH
less likely to wreck on its own or to incur serious damage. So treatment isn't as simple, but the cancer isn't as dangerous."
Very nicely said.
******************************
The Not-Knowing is still frustrating, even after a day or so to think about it. I'm focusing on the overall news, which is positive. Isabel, a woman of action, would like to be able to do something -- anything, it seems, including tearing out the effected lymph nodes by hand. No real change in Peter or Catherine's attitudes toward it all, at least not outwardly, but John was a little upset last night about the lingering uncertainty. Isabel talked to him about his own uncertainty in living with food allergies. We all panicked when we first learned of his diagnosis, and thought for sure we wouldn't ever be able to do what we needed to do to keep him safe. But we did. We read a lot, we experimented a lot, we served as advocates for him, and while his allergies haven't gone away, we've learned to do what we can to live with the uncertainty. He seemed better after that.
So maybe that's our model. We're always kind of on the edge with him. We've accepted that there are lots of things beyond our control with his situation, but we do what we can to prevent and prepare, and then we do what we can when it's time to take action. We'll do the same with the lymphoma. Watch and wait. Ask plenty of questions so we're prepared when we need to be.
********************
Isabel and I are going to see Rent tonight on stage at the Shubert -- I got Isabel tickets for Christmas.
I'm probably not going to post anything tomorrow (Sunday), unless people want my thoughts on the South Carolina primary or the Tom Brady situation -- you know, "typical" blog stuff. But I'll definitely post on Monday, late morning or afternoon, after I see Dr. C.
Tired because I ran 3.1 miles this morning, the equivelant of a 5K race, and I did hills for about half of it. I'll mostly take it easy today, even try for a nap, hoping a child doesn't wake me or a dog doesn't lick me. But overall, I feel good -- not like someone who's sick.
********************
The lymphoma specialist's office called late yesterday afternoon. I go to see him Monday at 8:00am. I was impressed with how quick that was, and his secretary said he liked to see new patients within a week of getting a referral. I'm assuming I'm also benefiting from the fact that Dr. R used to work with Dr. C, and knows the secretary well, and not that Dr. C is worried and so wants to see me quicly. (Dr. R has already discussed my case with Dr. C by phone, so my guess is that they agree with the waiting approach in general). There may be something new after the meeting, since he'll now get to see the biopsy slides and scan pictures himself. But I'm guessing there won't be too much new to say about the situation.
However, since he's a specialist in lymphoma (Dr. R is a general oncologist), I'm gathering more specific questions about NHL, and follicular lymphoma in particular, that I can ask.
********************
Thanks to Nicole, my friend and colleague, for this helpful description of the low-grade lymphoma paradox:
"Here's how a doctor I know once explained the difference between slow growing
and fast growing cancer --Imagine slow growing cancer is like a Lincoln Continental (say, 1980-ish), and fast growing cancer is like a little, speedy sportscar (you pick). The sports car is easier to knock off the road than the Lincoln, but the Lincoln is MUCH
less likely to wreck on its own or to incur serious damage. So treatment isn't as simple, but the cancer isn't as dangerous."
Very nicely said.
******************************
The Not-Knowing is still frustrating, even after a day or so to think about it. I'm focusing on the overall news, which is positive. Isabel, a woman of action, would like to be able to do something -- anything, it seems, including tearing out the effected lymph nodes by hand. No real change in Peter or Catherine's attitudes toward it all, at least not outwardly, but John was a little upset last night about the lingering uncertainty. Isabel talked to him about his own uncertainty in living with food allergies. We all panicked when we first learned of his diagnosis, and thought for sure we wouldn't ever be able to do what we needed to do to keep him safe. But we did. We read a lot, we experimented a lot, we served as advocates for him, and while his allergies haven't gone away, we've learned to do what we can to live with the uncertainty. He seemed better after that.
So maybe that's our model. We're always kind of on the edge with him. We've accepted that there are lots of things beyond our control with his situation, but we do what we can to prevent and prepare, and then we do what we can when it's time to take action. We'll do the same with the lymphoma. Watch and wait. Ask plenty of questions so we're prepared when we need to be.
********************
Isabel and I are going to see Rent tonight on stage at the Shubert -- I got Isabel tickets for Christmas.
I'm probably not going to post anything tomorrow (Sunday), unless people want my thoughts on the South Carolina primary or the Tom Brady situation -- you know, "typical" blog stuff. But I'll definitely post on Monday, late morning or afternoon, after I see Dr. C.
Friday, January 25, 2008
Good News, Overall
The results are in, and overall they're good, but with some weird little twists. You need to read everything before you come to any conclusions about the news, and not focus on the various pieces. (And my conclusion is that it's overall good.)
Good news: I have a low-grade follicular lymphoma. We knew it was follicular, but the confirmation of "low grade" is new. Here's the important thing to focus on: Low grade Non-Hodgkins rarely kills people. That's pretty much a quote from Dr. R. Keep that sentence in mind, especially as you read:
Bad news: The tests show it's at Stage 3, which means it has spread. With NHL, stage 1 means it is localized in one spot, like the nodes near my hip bone. Stage 2 would mean it has spread, but is either on the same side of the body, or has stayed below my diaphragm. Stage 3 means it has spread to the opposite side of the body, and/or has traveled above the diaphragm. For me, it's "and," and not "or." The PET scan picked up some Lymphoma in the nodes on the opposite side of my groin, in nodes near my right lung, possibly near my arm pit, and possibly in my neck. However, we're not panicking at such a list, because Low grade Non-Hodgkins rarely kills people. And besides, there's
Good news about the spreading, namely that it has been contained in the lymphatic system and not traveled to my spleen, liver, lungs, or bone marrow. Any spreading to those places would have made it a stage 4. But there's a paradox with NHL, which some might take as
Bad News, especially if you're looking for all of this to be over with quickly. This is kind of tough to wrap your brain around, but I think I've got it: while low grade Non-Hodgkins rarely kills people, it's also much harder to eradicate than high grade aggressive lymphoma. Radiation is tough, because it's in so many different spots. And chemotherapy could work, but because it's low grade, it might reduce symptoms without getting rid of all of the lymphoma. I understood the concept as he explained it, but I'm having a hard time explaining it myself, unfortunately. So, there's
Good news, and that is, his recommended strategy at this point is to "watch and wait," as medical professionals call it, and which is described at this Lymphoma Information Network web site. Basically, I'm not showing any other symptoms, the lymphoma is really slow-growing, and we need to see if anything else happens. We can afford to wait three months, at which time I'll do another PET scan to check on things. Why? Because it's a non-aggressive, slow growing, low grade lymphoma, and low grade Non-Hodgkins rarely kills people. Of course, the
Bad news is that there's no quick fix. Ideally, I'd have been told it was stage 1 and we'd have started radiation right away. Less ideal, but OK, would have been that it was advanced stage 3 and we would start chemo right away. What we have is something in the middle: stage 3 that doesn't need, and maybe wouldn't respond, to treatment right away. Frustrating, yes, but not as worrisome, because low grade Non-Hodgkins rarely kills people.
I'll let you decide if it's good news or bad news, but it's possible for this to lie dormant for three months, so at my next scan, there's no change. In fact, there could be little to no change for months and possibly years. Good news is that it might not get worse; bad news in that I'm just kind of waiting for something to happen.
So the plan now is this:
1) Get a second opinion from the famous Dr. C at Yale. He's the lymphoma specialist. Dr. R has already consulted with him by phone. I'll see him either next week or the following week, and he'll look at biopsy reports, slides, scans, etc., and decide if on closer inspection the wait and watch approach is the best course. We can afford some time, because low grade Non-Hodgkins rarely kills people.
2) I'll continue to see Dr. R once a month. He'll do a physical exam for any signs of lymph nodes swelling enough to feel, and he'll do some blood work to make sure it isn't spreading to the bone marrow, which would be bad news, but also good news, because then we could decide on a course of treatment and feel like we're doing something. More good news is that my blood work from last week was "perfect," according to Dr. R.
3) In three months, we'll do another CT scan and PET scan to determine if there's any change.
And then we'll continue to do monthly check ups and 3 month scans.
So, overall, it's good news. Frustrating to have to wait and just not know, but better than the alternative. In the meantime, we'll take whatever good we can from it, maybe learning to live with uncertainty and appreciating things short term. I don't know -- I'm not good at being philosophical, and I don't want to sound like the posters that hang on the walls of all 12 doctors' offices I've been to in the last 4 months.
This is going to make for some seriously boring blog entries. Apparently, I've already made my brother bored with one. (And when you make an accountant yawn, you know you have a problem.) I'll provide updates every few days (like with the second opinion discussion), but I'm not sure what else to say.
You can help by donating to my brother's Pan Mass Challenge bike ride this summer; he'll be riding his bike across Massachusetts to raise money for cancer research. You can donate on line by clicking here. Beats waiting around for me to post something.
********************************************
I received an anonymous gift in the mail yesterday: this t-shirt from McSweeney's, one of my favorite web sites. Don't know who it came from, but it was someone who knows (1) that I love McSweeney's, and (2) that I almost ran away to join Ringling Brothers Clown College, opting instead for graduate school. So thanks, whoever you are.
Good news: I have a low-grade follicular lymphoma. We knew it was follicular, but the confirmation of "low grade" is new. Here's the important thing to focus on: Low grade Non-Hodgkins rarely kills people. That's pretty much a quote from Dr. R. Keep that sentence in mind, especially as you read:
Bad news: The tests show it's at Stage 3, which means it has spread. With NHL, stage 1 means it is localized in one spot, like the nodes near my hip bone. Stage 2 would mean it has spread, but is either on the same side of the body, or has stayed below my diaphragm. Stage 3 means it has spread to the opposite side of the body, and/or has traveled above the diaphragm. For me, it's "and," and not "or." The PET scan picked up some Lymphoma in the nodes on the opposite side of my groin, in nodes near my right lung, possibly near my arm pit, and possibly in my neck. However, we're not panicking at such a list, because Low grade Non-Hodgkins rarely kills people. And besides, there's
Good news about the spreading, namely that it has been contained in the lymphatic system and not traveled to my spleen, liver, lungs, or bone marrow. Any spreading to those places would have made it a stage 4. But there's a paradox with NHL, which some might take as
Bad News, especially if you're looking for all of this to be over with quickly. This is kind of tough to wrap your brain around, but I think I've got it: while low grade Non-Hodgkins rarely kills people, it's also much harder to eradicate than high grade aggressive lymphoma. Radiation is tough, because it's in so many different spots. And chemotherapy could work, but because it's low grade, it might reduce symptoms without getting rid of all of the lymphoma. I understood the concept as he explained it, but I'm having a hard time explaining it myself, unfortunately. So, there's
Good news, and that is, his recommended strategy at this point is to "watch and wait," as medical professionals call it, and which is described at this Lymphoma Information Network web site. Basically, I'm not showing any other symptoms, the lymphoma is really slow-growing, and we need to see if anything else happens. We can afford to wait three months, at which time I'll do another PET scan to check on things. Why? Because it's a non-aggressive, slow growing, low grade lymphoma, and low grade Non-Hodgkins rarely kills people. Of course, the
Bad news is that there's no quick fix. Ideally, I'd have been told it was stage 1 and we'd have started radiation right away. Less ideal, but OK, would have been that it was advanced stage 3 and we would start chemo right away. What we have is something in the middle: stage 3 that doesn't need, and maybe wouldn't respond, to treatment right away. Frustrating, yes, but not as worrisome, because low grade Non-Hodgkins rarely kills people.
I'll let you decide if it's good news or bad news, but it's possible for this to lie dormant for three months, so at my next scan, there's no change. In fact, there could be little to no change for months and possibly years. Good news is that it might not get worse; bad news in that I'm just kind of waiting for something to happen.
So the plan now is this:
1) Get a second opinion from the famous Dr. C at Yale. He's the lymphoma specialist. Dr. R has already consulted with him by phone. I'll see him either next week or the following week, and he'll look at biopsy reports, slides, scans, etc., and decide if on closer inspection the wait and watch approach is the best course. We can afford some time, because low grade Non-Hodgkins rarely kills people.
2) I'll continue to see Dr. R once a month. He'll do a physical exam for any signs of lymph nodes swelling enough to feel, and he'll do some blood work to make sure it isn't spreading to the bone marrow, which would be bad news, but also good news, because then we could decide on a course of treatment and feel like we're doing something. More good news is that my blood work from last week was "perfect," according to Dr. R.
3) In three months, we'll do another CT scan and PET scan to determine if there's any change.
And then we'll continue to do monthly check ups and 3 month scans.
So, overall, it's good news. Frustrating to have to wait and just not know, but better than the alternative. In the meantime, we'll take whatever good we can from it, maybe learning to live with uncertainty and appreciating things short term. I don't know -- I'm not good at being philosophical, and I don't want to sound like the posters that hang on the walls of all 12 doctors' offices I've been to in the last 4 months.
This is going to make for some seriously boring blog entries. Apparently, I've already made my brother bored with one. (And when you make an accountant yawn, you know you have a problem.) I'll provide updates every few days (like with the second opinion discussion), but I'm not sure what else to say.
You can help by donating to my brother's Pan Mass Challenge bike ride this summer; he'll be riding his bike across Massachusetts to raise money for cancer research. You can donate on line by clicking here. Beats waiting around for me to post something.
********************************************
I received an anonymous gift in the mail yesterday: this t-shirt from McSweeney's, one of my favorite web sites. Don't know who it came from, but it was someone who knows (1) that I love McSweeney's, and (2) that I almost ran away to join Ringling Brothers Clown College, opting instead for graduate school. So thanks, whoever you are.
Thursday, January 24, 2008
Not Much Today
Today I'm Feeling: Good.
I ran 2 miles this morning. As usual, I could have done more. Isabel teaches at 8:00 on Tuesday and Thursday, so I needed to quit early and get the family moving. I'll do more on Saturday.
Not much to talk about today. We have a job candidate on campus today, so I'm tied up with interviews, lunch, a presentation, etc. all day. Good to keep my mind occupied.
We hear more news tomorrow. Update in the afternoon.
I ran 2 miles this morning. As usual, I could have done more. Isabel teaches at 8:00 on Tuesday and Thursday, so I needed to quit early and get the family moving. I'll do more on Saturday.
Not much to talk about today. We have a job candidate on campus today, so I'm tied up with interviews, lunch, a presentation, etc. all day. Good to keep my mind occupied.
We hear more news tomorrow. Update in the afternoon.
Wednesday, January 23, 2008
A little bit of good news
Dr. R just called. The bone marrow biopsy came back negative.
We'll know more Friday, but at least it hasn't spread there.
We'll know more Friday, but at least it hasn't spread there.
The Scans
Today I'm feeling: Good.
Mostly because I'm about to use the word "heretofore" in my blog, which actually makes me a little giddy.
****************************************
Well, Fred Thompson went and dropped out of the Presidential race, leaving me without a Non-Hodgkins Lymphoma candidate. Huckabee has diabetes, Edwards' wife has breast cancer, Obama is going to smoke himself into emphysema someday....Don't know what I'm going to do on Superduper Tuesday. Someone needs to step up -- as the fastest growing cancer in the country, we NHL folks are an important demographic that has been heretofore ignored by the candidates.
*****************************************
A couple of quick things before I get into the scans I had today:
First, we've heard from a few people who have said, "I was going to call/e-mail, but I didn't want to bother you." It's OK to call. I said the blog was to keep people updated so they wouldn't feel guilty about calling, but I didn't mean that you can't call at all. This blog has been great for me. But Isabel, I sense, doesn't get as much chance to unload. So it's OK to see how she's doing every once in a while.
Second, a few people have said to us, "I told so-and-so about Bob. I hope that was OK." Yes, that's OK. We're not hiding anything. What's more, the hardest part of this has been telling people the news (though that gets easier with practice). We told people who were most directly affected. If there are other friends/co-workers/family members who don't know, it's OK to tell them. The more prayers and positive energy, the better.
***************************************
So I had the scans today, a CT scan and a PET scan. As I've explained before, the CT scan gives a full picture of my torso, and the PET scan shows the "hot spots" (if any) where the lymphoma might have spread. Dr. R isn't sure what will show up; PET scans for NHL are often less effective than for other cancers because it's so slow-growing. They don't quickly use up the sugar that other cancers do, so they don't show up as brightly on the scan.
My appointment was for 8:15 this morning at the Hospital of St. Raphael downtown. It was yet another one of those tests where I wasn't allowed to eat after midnight, so the 8:15 am wasn't so bad (the node biopsy surgery was originally scheduled for 2:00 in the afternoon, moved up to 11:00am, thank goodness. That was killer to not eat all day.). We arrived on time and checked in. Over the last few months, I've accumulated a wristband ID band collection that will soon rival my wet-nap collection, but without the geographical diversity.
I was taken in pretty quickly, and led to a nice comfy chair, where they put an IV line into my arm and poured me a Barium milkshake. It's not really a milkshake, but it has that consistency. It's very sweet, slightly pina-colada tasting, and it helps with the CT scan. The nurse poured me a big cup from a quart jug and told me start drinking. I made a yummy sound, and she said, "Glad you like it, because we need you to drink the whole jug. Should take 4 or 5 cup-fulls." So I sipped my pina colada barium milkshake and answered her questions about my kidneys.
From here, I was given the radioactive sugar solution through the IV line, and told I needed to sit still for an hour. "Can I read?" I asked, pointing to the book I had brought (Christopher Moore's Fluke, in case you're curious). I was told they would prefer I didn't read, that I just sit or lie down and relax. And so I did. They played some soothing music and, because I was currently the only patient in the room, they dimmed the lights. They even put a warmed blanket on me. I decided I was going to take a nap.
Which I would attempt right after I sucked down two more cups of pina colada barium milkshake. And once they stopped banging boxes of whatever supplies they had just delivered on the other side of my curtain. And once they moved the CD player off whatever annoying Enya song was playing. And once the new patient that they brought in stopped talking.
So I didn't nap, but I did keep still for an hour, which was an accomplishment for me.
They then brought me in to the scan room. First, a half hour PET can, then a 5 minute CT scan. No big deal. I've already had a CT and an MRI in the last three months, so I knew what I was in for. The hardest part, for me, is keeping absolutely still. I getting restless easily.
The procedure, they explained, was this: I'd lie on a table, and the table is moved through a large donut-shaped structure. the inner layer of the donut moves around in a circle to take the scan. The PET scan is done in stages, so first my head and chest are in the donut for four minutes. Then the table moves forward about six inches, and the middle of my chest gets scanned for four minutes, then the table moves six more inches, etc. After about a half hour, I'm taken out, readjusted, and the CT scan happens (quickly -- no 4 minute stages, just one slow 2 minute push through). They needed a clear shot of my torso, so I had to put my hands straight out behind/above my head.
So they strapped me on to the table and reminded me that I absolutely can't move, or it would ruin the images. I went through with the first segment, and moved a few inches forward. I tried to distract myself, and what I began to think about was my nifty new collection of wristband ID bracelets. I got one for the CT scan in October, one for the MRI in December, one for the lymph node biopsy, one for the Upper GI endoscopy...Ah, yes, the endoscopy. I have Gastro-Esophogeal Reflux Disorder, GERD, and I'm on Nexium for it. The Nexium helps a lot. It's a Proton Pump Inhibitor, which shuts down some, but not all, of the tiny acid pumps in my stomach so I don't get reflux/heartburn. The only bad side effect I've encountered has been that I can't eat certain foods. It seems like my lack of stomach acid makes it tough to digest certain things, and I get stomach cramps about an hour after I eat them. Mostly high fat foods or foods that are hard to digest. Chicken skin....Steak and onions....
.....and, apparently, pina colada barium milkshakes.....
About 10 minutes into the PET scan, I started getting that familiar stomach cramp. I didn't know what to do. Call for help? Raise my hand? Grin and bear it? If I stopped it, would I have to start all over again? Today? Was the barium time-sensitive, so I'd need to do again another day? I decided to keep my mouth shut and hope it either went away, or didn't get so bad that it would make me flinch, or worse.
Luckily, it passed.
And then I relaxed enough to almost fall asleep. Except that every time I drifted off, the table would buck and move six inches, and it would jolt me awake, and I'd have to quickly recover my senses enough to not move.
After a while, I came to the horrible realization that my shoulders had fallen asleep. My arms had been behind/above my head for all this time. I've never heard of shoulders falling asleep before -- hands, feet, whole arms, but never just shoulders. But there they were. I tried to flex them a little, and I couldn't feel anything. Another decision time -- do I say something? I wasn't counting how many times I'd moved forward, but I figured they had to be close to finished. My head and chest were way out of the other end of the donut, so I was probably on the last segment of the scan, and maybe moving my arms a little wouldn't affect anything. But I couldn't take that chance. If I asked and they said No, I'd keep thinking about it, and it would get worse. So I kept my mouth shut again. Thankfully, they were done about two minutes later.
They brought me back through the donut and let me rest my arms for about 5 minutes while they prepared the CT scan. That one was easy -- 2 minutes and I was out.
Other than the pina-colada-barium-milkshake-induced stomach cramps, and the sleepy shoulders, the whole thing was fairly painless.
So the next step is to meet with Dr. R on Friday. He'll look at the scans, the biopsies, the blood work, and anything else he can think of, and we'll figure out which category and stage I'm at, and what the best course of action will be. I'm guessing we'll get a second opinion next week, but we should get started soon with the treatment.
Incidentally, yesterday Isabel spoke with Dr. M, our kids' pediatrician. He's an incredibly nice man, loves our kids, we love him, and he used to be a pediatric oncologist (which I imagine is the hardest job in the world, which is why he got out of it, from what I'm told). We mostly wanted to ask him about specialists in the area. He told us that he's still plugged in to the pediatric oncology community, though not so much the adult one. He also told us that the second opinion about treatment was a good idea, though to not be surprised if what we hear just confirms the first opinion. Apparently, with more common cancers like this one, there's a sort of standard protocol for treatment based on staging and category. Assuming we don't get any big surprises, we'll probably be told the same thing that Dr. R tells us. So that's something to think about.
*******************************
Tune in tomorrow for the further adventures of Radioactive Boy, and his faithful companion, Sprinkles the Wonder Dog.
Mostly because I'm about to use the word "heretofore" in my blog, which actually makes me a little giddy.
****************************************
Well, Fred Thompson went and dropped out of the Presidential race, leaving me without a Non-Hodgkins Lymphoma candidate. Huckabee has diabetes, Edwards' wife has breast cancer, Obama is going to smoke himself into emphysema someday....Don't know what I'm going to do on Superduper Tuesday. Someone needs to step up -- as the fastest growing cancer in the country, we NHL folks are an important demographic that has been heretofore ignored by the candidates.
*****************************************
A couple of quick things before I get into the scans I had today:
First, we've heard from a few people who have said, "I was going to call/e-mail, but I didn't want to bother you." It's OK to call. I said the blog was to keep people updated so they wouldn't feel guilty about calling, but I didn't mean that you can't call at all. This blog has been great for me. But Isabel, I sense, doesn't get as much chance to unload. So it's OK to see how she's doing every once in a while.
Second, a few people have said to us, "I told so-and-so about Bob. I hope that was OK." Yes, that's OK. We're not hiding anything. What's more, the hardest part of this has been telling people the news (though that gets easier with practice). We told people who were most directly affected. If there are other friends/co-workers/family members who don't know, it's OK to tell them. The more prayers and positive energy, the better.
***************************************
So I had the scans today, a CT scan and a PET scan. As I've explained before, the CT scan gives a full picture of my torso, and the PET scan shows the "hot spots" (if any) where the lymphoma might have spread. Dr. R isn't sure what will show up; PET scans for NHL are often less effective than for other cancers because it's so slow-growing. They don't quickly use up the sugar that other cancers do, so they don't show up as brightly on the scan.
My appointment was for 8:15 this morning at the Hospital of St. Raphael downtown. It was yet another one of those tests where I wasn't allowed to eat after midnight, so the 8:15 am wasn't so bad (the node biopsy surgery was originally scheduled for 2:00 in the afternoon, moved up to 11:00am, thank goodness. That was killer to not eat all day.). We arrived on time and checked in. Over the last few months, I've accumulated a wristband ID band collection that will soon rival my wet-nap collection, but without the geographical diversity.
I was taken in pretty quickly, and led to a nice comfy chair, where they put an IV line into my arm and poured me a Barium milkshake. It's not really a milkshake, but it has that consistency. It's very sweet, slightly pina-colada tasting, and it helps with the CT scan. The nurse poured me a big cup from a quart jug and told me start drinking. I made a yummy sound, and she said, "Glad you like it, because we need you to drink the whole jug. Should take 4 or 5 cup-fulls." So I sipped my pina colada barium milkshake and answered her questions about my kidneys.
From here, I was given the radioactive sugar solution through the IV line, and told I needed to sit still for an hour. "Can I read?" I asked, pointing to the book I had brought (Christopher Moore's Fluke, in case you're curious). I was told they would prefer I didn't read, that I just sit or lie down and relax. And so I did. They played some soothing music and, because I was currently the only patient in the room, they dimmed the lights. They even put a warmed blanket on me. I decided I was going to take a nap.
Which I would attempt right after I sucked down two more cups of pina colada barium milkshake. And once they stopped banging boxes of whatever supplies they had just delivered on the other side of my curtain. And once they moved the CD player off whatever annoying Enya song was playing. And once the new patient that they brought in stopped talking.
So I didn't nap, but I did keep still for an hour, which was an accomplishment for me.
They then brought me in to the scan room. First, a half hour PET can, then a 5 minute CT scan. No big deal. I've already had a CT and an MRI in the last three months, so I knew what I was in for. The hardest part, for me, is keeping absolutely still. I getting restless easily.
The procedure, they explained, was this: I'd lie on a table, and the table is moved through a large donut-shaped structure. the inner layer of the donut moves around in a circle to take the scan. The PET scan is done in stages, so first my head and chest are in the donut for four minutes. Then the table moves forward about six inches, and the middle of my chest gets scanned for four minutes, then the table moves six more inches, etc. After about a half hour, I'm taken out, readjusted, and the CT scan happens (quickly -- no 4 minute stages, just one slow 2 minute push through). They needed a clear shot of my torso, so I had to put my hands straight out behind/above my head.
So they strapped me on to the table and reminded me that I absolutely can't move, or it would ruin the images. I went through with the first segment, and moved a few inches forward. I tried to distract myself, and what I began to think about was my nifty new collection of wristband ID bracelets. I got one for the CT scan in October, one for the MRI in December, one for the lymph node biopsy, one for the Upper GI endoscopy...Ah, yes, the endoscopy. I have Gastro-Esophogeal Reflux Disorder, GERD, and I'm on Nexium for it. The Nexium helps a lot. It's a Proton Pump Inhibitor, which shuts down some, but not all, of the tiny acid pumps in my stomach so I don't get reflux/heartburn. The only bad side effect I've encountered has been that I can't eat certain foods. It seems like my lack of stomach acid makes it tough to digest certain things, and I get stomach cramps about an hour after I eat them. Mostly high fat foods or foods that are hard to digest. Chicken skin....Steak and onions....
.....and, apparently, pina colada barium milkshakes.....
About 10 minutes into the PET scan, I started getting that familiar stomach cramp. I didn't know what to do. Call for help? Raise my hand? Grin and bear it? If I stopped it, would I have to start all over again? Today? Was the barium time-sensitive, so I'd need to do again another day? I decided to keep my mouth shut and hope it either went away, or didn't get so bad that it would make me flinch, or worse.
Luckily, it passed.
And then I relaxed enough to almost fall asleep. Except that every time I drifted off, the table would buck and move six inches, and it would jolt me awake, and I'd have to quickly recover my senses enough to not move.
After a while, I came to the horrible realization that my shoulders had fallen asleep. My arms had been behind/above my head for all this time. I've never heard of shoulders falling asleep before -- hands, feet, whole arms, but never just shoulders. But there they were. I tried to flex them a little, and I couldn't feel anything. Another decision time -- do I say something? I wasn't counting how many times I'd moved forward, but I figured they had to be close to finished. My head and chest were way out of the other end of the donut, so I was probably on the last segment of the scan, and maybe moving my arms a little wouldn't affect anything. But I couldn't take that chance. If I asked and they said No, I'd keep thinking about it, and it would get worse. So I kept my mouth shut again. Thankfully, they were done about two minutes later.
They brought me back through the donut and let me rest my arms for about 5 minutes while they prepared the CT scan. That one was easy -- 2 minutes and I was out.
Other than the pina-colada-barium-milkshake-induced stomach cramps, and the sleepy shoulders, the whole thing was fairly painless.
So the next step is to meet with Dr. R on Friday. He'll look at the scans, the biopsies, the blood work, and anything else he can think of, and we'll figure out which category and stage I'm at, and what the best course of action will be. I'm guessing we'll get a second opinion next week, but we should get started soon with the treatment.
Incidentally, yesterday Isabel spoke with Dr. M, our kids' pediatrician. He's an incredibly nice man, loves our kids, we love him, and he used to be a pediatric oncologist (which I imagine is the hardest job in the world, which is why he got out of it, from what I'm told). We mostly wanted to ask him about specialists in the area. He told us that he's still plugged in to the pediatric oncology community, though not so much the adult one. He also told us that the second opinion about treatment was a good idea, though to not be surprised if what we hear just confirms the first opinion. Apparently, with more common cancers like this one, there's a sort of standard protocol for treatment based on staging and category. Assuming we don't get any big surprises, we'll probably be told the same thing that Dr. R tells us. So that's something to think about.
*******************************
Tune in tomorrow for the further adventures of Radioactive Boy, and his faithful companion, Sprinkles the Wonder Dog.
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