Wednesday, January 30, 2008

No real news today

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.

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.

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.

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.

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.

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.

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.

Tuesday, January 22, 2008

Today I'm feeling: Fine.

Physically, I'm fine. Otherwise, I'm feeling anxious. As in, I really just want to get moving with this. But I know I have to be patient. Tomorrow I have the scans in the morning, then Friday we'll meet with Dr. R to discuss the results of all the various tests, and determine treatment options.

It helps that classes started up again today, so I'll be good and busy. If I'm not busy, I have too much time to think, and that's not good. A little information is dangerous, so I'd rather just wait and know for sure what we're dealing with, rather than go to WebMD and guess incorrectly, or worry about all 12 possible options. The first few days of the semester are a constant stream of students and teachers with problems. (I wrote this post earlier this morning, now I'm taking a break to edit this and publish it. It' s about 10:30, and so far, we have a broken photocopier -- not good in an English department, especially on the first day; a locked classroom that no office on campus wants to take responsibility for opening (could be custodial, could be facilities, could be campus safety, could by IT); an order from the Provost that the new instructor we hired last week cannot go to her class today or any other day until HR finishes a background check -- in a week; 10 students looking to get into classes that are full, because of their special case (fill in your excuse here). It's all kind of a typical first day of classes.)

So it's good to keep myself occupied while I'm waiting. In the meantime, I'm supposed to increase my water intake today, and then again after the test tomorrow. Apparently, this helps flush the raditiation out of my system more quickly.

(There's a great joke in there somewhere about my dog pooping sprinkles and me urinating radiation, but good taste prevents me from making it.)


Thanks to all who have posted comments. I check the blog once or twice to day to read new ones. Feel free to comment. Don't feel the need to be clever or anything; it's just nice to see who's reading. And don't feel compelled to comment, but go ahead if you feel like it.

This is actually my second blog. I did one last spring, too, when I taught a course in research writing. The students were intimidated by the idea of an 8-10 page paper, so I decided I would write one along with them, and keep a blog of my experiences. The idea is that all writers have the same problems, but experienced writers have developed strategies for overcoming those problems. So, they could read my blog and see how I was handling the problems that they were likely encountering themselves.

I referred to the blog in class every now and then, but mostly it was something they were free to make time for on their own. By the end of the semester, I had received only 1 comment to all of my posts. I surveyed the students on the last day about their technology experiences. They were all very tech savvy -- most had MySpace or Facebook pages -- but all of them admitted that they had never actually read the blog.

So I was pretty thrilled to get some comments on this one.


I finally tracked down the blog for Lymphomaniac, the person who stole my idea before I had it. I was hoping I could at least get some insight into his/her experiences with lymphoma.

Turns out he published his blog in 2004. He was then a 34 year old web designer from San Jose. His first post described how he went to dinner with his parents one night, and his father noticed a lump on his neck. He describes how he researched swollen lymph nodes, and was sure he had lymphoma, and so started the Lymphomaniac blog. The second post described, in two paragraphs, his going to the doctor, having a needle biopsy done, and after a five minute die test, hearing from the doctor that it was nothing to worry about.

That was it. The complete Lymphomaniac blog.

Didn't I tell you mine would be better than his?


Last thing: Non-Hodgkins Lymphoma is one of the fastest-growing types of cancer in the country. Presidential contender (for now) Fred Thompson has had it. It generally affects males more often than females, and especially affects the devastatingly handsome, which helps explain both me and Fred Thompson. I've heard from a whole bunch of people about family and friends of theirs who have been diagnosed with NHL, and who beat it. I like those stories. Keep them coming.

Monday, January 21, 2008

Just Another Day

Today I'm feeling: Good, still.
I ran 2.5 miles again today, with "hills" (inclines) on the treadmill, so it was a little harder than Saturday's. And again, I could have done more, but I'm going for maintaining my health at this point, so I'll under-do instead of over-do. With the scans on Wednesday, I'm not supposed to exercise beforehand, so I'll try to run again on Thursday. It will probably be a short one, since Isabel will need to leave for class early.


Not a whole lot of news to share. Still waiting for the scans on Wednesday -- that's the next big thing. But apparently, some people get upset if I don't write every day, so I'll come up with something to say now. (I'm an English professor, after all. We can usually come up with some way to fill an hour or so.)


Isabel's college roommare, Robin, is a doctor, and she offered some advice: don't stay with an oncologist who won't answer all of your questions, and make sure you seek a second opinion.

We're pretty pleased with my oncologist, Dr. R. He's young -- I'd say late 30's, married with twins. The best part about him is that he did his internship and residency at BU Medical Center. (I looked that up on his practice's website. When I saw him for the biopsy, he asked if we had any questions about anything, and I said I needed to ask him about his credentials. He straightened himself up a bit, and then confirmed that he did time at BU Med. We punched fists and said "Go Terriers!".....Well, I said "Go Terriers," but he didn't cringe. And he did punch it.)

I like that he opened up by asking if we had any questions (we'd seen him 24 hours earlier). We had a few, and he answered them. In fact, when we first saw him, he answered all of our questions pretty thoroughly, even stopping himself a few times to give us some background so we'd understand his response. Very thorough, very clear, lots of making sure we understood. We like that.

He also did a fellowship in oncology at Yale for 4 years, working with a renown Lymphoma specialist. He told us that he still consults with this specialist (and we've since heard from someone else who had three family members cured when they worked with this specialist.) He said if we wanted to get in to see the specialist, he could probably get us into him pretty quickly(his wife works for the specialist, too). So he's OK about second opinions, too.

At this point, it seems like we'll probably stay with young Dr. R. My fear is that a specialist might be too busy, too science-y, not personable enough. Dr. R seems ideal as our frontline guy, given how good he is at communicating, and if he has this direct line to the specialist, we'll benefit from that indirectly.

Dr. R. also seemed genuinely sorry that he caused me unavoidable discomfort during the bone marrow biopsy. I like that, too. He's still young enough that he hasn't learned to totally steel himself against his patients' pain.


The last issue to discuss today is the final member of the family to address: the dog.

Isabel and I have been so busy with doctors and kids for the last few weeks that we've ignored Strudel a little bit, so she was starting to show it, getting into stuff that she shouldn't just to get our attention. Her not getting as much exercise as usual hasn't helped. We usually give her two 20-30 minute walks a day to work off some Schnauzer energy. Along with the cold weather, she wasn't getting that. But now, one walk, plus some time on the treadmill, and she's better.

She's a good dog. Very sweet.
How sweet is she?
Well, I'll tell you. Last week, we had ice cream with the kids, and one of them spilled a bunch of rainbow sprinkles on the floor, which Strudel ate. When Isabel took her for a walk the next day, the sprinkles had passed through her, and she left evidence that she had cleaned them up for us.

So, we used to tell people that we named her Strudel because she's so sweet. Now we can tell them, in full truth, that our dog is so sweet that she poops sprinkles.

Sunday, January 20, 2008

Telling the Kids

Today I'm feeling: Good
A note on these "Today I'm feeling" statements: I don't have any scale for what I'm saying. "just fine" and "pretty good" and "good" are all pretty much the same. Basically, I'm feeling normal. You'll know when there's a change, I'm sure.


We told the kids on Friday afternoon, after school. It was the hardest part of all of this, in some ways, but the easiest in some ways, because we'd told so many people between Tuesday and Friday that we were past some of the emotional reaction and could tell them calmly.

It was hardest, of course, because we weren't quite sure what to say. I read some things online about how to handle the subject with kids. We wanted to be positive and not scare them, but we also wanted to be honest, knowing that if they sensed we were keeping anything from them at all, they'd think the worst. I'd read that we shouldn't avoid the word "cancer," either, because they'll hear it from someone, and that will make it scarier, and they'd think we were hiding something.

We decided to tell them on Friday, after school, even though we'd first gotten the news on Tuesday. We figured doing so would give them three days (long weekend) to process it all, and three days for us to keep on eye on them and see how they were doing before they went back to school. Plus, my mom and dad were coming Friday afternoon, so they'd be both a distraction and another set of eyes and ears.

We sat them on the couch -- me between Peter and John on one couch, and Isabel with Catherine on the other. I told them that they'd had to go home from school with the Lamonts so much lately because we were seeing doctors who were trying to figure out what was wrong with me lately (I've been seeing about four doctors in the last few months for problems that may or may not be related to the NHL). I told them that we had bad news and good news. The doctors seemed to have figured it out: I had Non-Hodgkins Lymphoma, which is a type of cancer. Both John and Peter stiffened up and inhaled sharply. I told them to keep listening, because there was more to tell them. And I explained what I could about what cancer is, what NHL is, and how it's a fairly non-aggressive type.

I aksed Peter if he'd ever heard of NHL before. He said he hadn't, and I reminded him that NHL is what Jon Lester had. He exhaled deeply and seemed to relax. It was what I had hoped for. Lester pitches for the Red Sox, and overcame it, and though he had a different type of NHL, Peter understood that not all cancer is an automatic death sentence. He seems to be hanging on to this, which is good for now. He seems to understand that it's serious, but it's his way of looking on the bright side, which I'm OK with. Though there's a little bit of denial in there, too.

we explained what was going to happen from here: I would have more tests to determine just what exactly was going on and where in my body it was happening, and then we'd figure out the treatments. Peter asked if I was going to lose my hair. I said I might, depending on the treatment -- some medicines do that. Peter said "Cool!" and the three of them laughed.

(I asked them later on if they'd consider shaving their heads in solidarity, if it came to that. They all said "No way!" I asked if I could shave the dog instead....They're very protective of that dog......)

We also told them that we were going to be very honest with them, and not hide anything from them. We told them they needed to be honest with us, too, and talk to us. Ask any questions they might have, to us to to their teachers, or any other adult. Remember that "cancer" is a scary word, and that if someone tells them something that sounds scary, talk to us, because we're the ones who know best what is going on. We asked if they had any questions.

John did. He wanted to know what would happen if I got very sick. (We have lots of family and friends who will be able to help us out.) And then he worked up the courage to ask what would happen if I died. (Isabel said we'd be OK. We have insurance to help with money, so we'd be able to live the same way. And, again, we have lots of family and friends to help out.)

Tough question to ask, and I'm proud of him for asking it. John has always had a deeper sense of his own mortality than other kids his age, and it comes from having the severe food allergies he has. He understands, on some level, that "circle of life." It comes from, or influences, his love of nature.

John has been having the hardest time of the three. He's worried, naturally. Friday night, when I put the boys to bed, he seemed worried. Sometimes he'll half-whisper something he sort of wants me to hear, but sort of doesn't. So he half-whispered "I wish this didn't have to happen to us." I told him I wished that too, but it has happened, and we need to work together to get through it. Then he half-whispered that he thought the car accident I'd had on the 31st might have caused this. (The web sites I'd read said that kids sometimes make those kinds of connections between the cancer and other events that happened before it.) I told him that it wasn't the car accident, or anything that I did, and certainly not anything that he did. It just happened, and sometimes tings just happen.

Last night, Isabel and I went out for dinner and a movie, and mom paid close attention to John. At one point, she heard John expressing his fears to Peter. Peter told him that I'm just fine, and as proof, told John that he'd heard me running on the treadmill in the morning. (I'm always up first, and Peter is always up second, and his hearing me running is a nice, normal morning sound that he hadn't heard for over a week.)

when John got up this morning, he asked me how I was doing. I told him I was fine, and he told me about his converation with Peter. I told him I was going to keep on running as long as I could, and reminded him that the medicine I may have to take might make me tired, maybe too tired to run.

So we're keeping an eye on John.

Catherine, through the initial conversation and since then, has seemed kind of blissfully ignorant. I don't think she quite grasps what this is all about. Which is probably OK. She's very sensitive to other people's emotions, and I'm guessing if/when things change, she's going to start getting it.

For now, if you encounter our kids, I'd say the best thing to do is take their cues. If they seem to need to talk, then ask them, subtly, if they want to talk. Maybe just ask how everything is going. If they don't take the bait, let it go. They all have great teachers who will be there for them, if they need that. What wouldn't be helpful is to, without invitation, say something like "This must be very hard for you." (Someone did that to me at my grandmother's wake, years ago. I was doing just great until then. The person was trying to be helpful, but wasn't. It wasn't anyone I wanted to open up to.)

They'll be OK.


A couple of people e-mailed me earlier today to ask if I was OK, since I hadn't posted anything yet today.
It's Sunday, folks. Give me a chance to rest. Weekends are harder to post, since I'm fighting with the kids for computer time. So assume the best if you don't hear from me. I'll get there.


And thanks to everyone who sent suggestions for movies we should see last night.
Several people recommended Alvin and the Chipmunks, figuring it was light-hearted fare for us. The problem is, Alvin's voice is a little grating for 90 minutes. Grating enough that I half-belive that Internet rumor that listening to Alvin's voice might actually kill cancer cells. We decided against that one.

We ended up seeing Charlie Wilson's War. It's a true story of a Congressman who visits a refugee camp full of wounded and maimed Afghanis, hurt by sadistic Soviets during the war in the 80's. Wilson works behind the scenes to secure funding for the Afghanis so they could buy stinger missiles and shoot down Soviet helicoptors, which they did in great numbers.

It was a comedy.

Saturday, January 19, 2008

Ground Rules

Today I'm feeling: Pretty good.
In fact, I ran 2.5 miles this morning. I think I could have gone longer or faster, but it's my first run in 10 days, on the orders of the surgeon after the biopsy. No sense in pushing it too hard. I typically run about 3 miles, three mornings a week, then 3-5 on Saturdays, depending on what kind of day we have planned. Lungs feel good, legs feel good. The incision on my hip from the biopsy looks fine. All very encouraging.

I like running. It's an efficient workout. I started running again about 20 months ago, after a very long layoff. I'd been biking a few days a week for about three or four years. It became obvious pretty quickly that 30 minutes of running was equal to about 90 minutes of biking. I don't think I've ever gotten the fabled "runner's high," but I do feel very good when I stop running, which is something, I guess.

I plan to keep running as long as I can. Dr. R, the oncologist, says to keep it up as long as I'm able. The likely treatment won't keep me from running, though it may slow me down some. I'll keep you all updated.

OK, it has quickly become necessary to establish ground rules for the blog, especially leaving comments. Leave it to my dear brother to make this necessary; see his comment from the first posting about what is and isn't appropriate for him to put in. Comments can be seen by anyone who gets online. If you want to say something and only want me to see it, feel free to e-mail me privately. I've been a teacher long enough to know that if one person has a concern or question, others do too, so I'll consider addressing the issue in a blog post for all to see.

Now, as for ground rules for comments, my dear brother:

1) Mother Theresa won't be reading the blog, at least not in an earthly sense. Although it's probably a good rule of thumb to live your life as if Mother Theresa were watching you. Especially when you're driving, from what your daughter tells me.

However, my wonderful brother-in-law Lee has long worked very closely with the Missionaries of Charity (Mother Theresa's order) in Washington, DC. The sisters are sending me a prayer card that contains a piece of Mother Theresa's habit, for which I am deeply, deeply grateful.

So, when considering what to say in posting comments, dear brother, please:
a) don't say anything that might cause the Sisters to ask me to return the prayer card.
b) don't say anything that would cause a beatific relic to actually incur physical damage simply from the words you write.

(And, yes, I do believe if anyone could think of something to say that would do physical damage to a beatific relic simply by saying it, it would be my brother.)

2) Remember that, even more important than Mother Theresa, my mother-in-law will be reading.

3) The wonderful people at St. Rita's will be reading. These include Sr. Maureen, the school principal; Father Charlie and Father Paul, our parish priests; the kids' teachers; and other friends from the parish.

I would rather we didn't alienate any of them. The St. Rita School family sent us a beautiful card yesterday, along with a wish that Isabel and go out tonight, and a gift that will allow that to happen. They're very good to us, and we love them for it. Same with Father Charlie, who even offered to baby-sit the kids for us if we need him to. (Although we're giving him 48 hours to really think that over. We all say unwise things in the heat of emotion that we regret later on.)

4) As you know, being in the technology industry, nothing on the Internet is private, and can come back years later to haunt you. Please don't write anything that might come up later should it appear on the same page as something one of my nieces or nephews writes, that could be seen later on by a potential employer, and could get them in trouble just by digital association with you.

I hope these guidelines help, dear brother. I hope they help all of you, but mostly it's my brother that I'm worried about.


So we're going out tonight. My mom and dad are here for the wekend to watch the kids. Mom bought me a Jon Lester shirt. Lester is a pitcher for the Red Sox who was diagnosed with NHL last year, overcame it, and won the clinching game of the world series for the Sox in October. So I'll be wearing this a lot.

Isabel and I were planning on dinner and a movie, something we haven't done in a while. So I looked up the North Haven cinema online to see what was playing:

The Bucket List. A movie about two terminally ill men who decide to do all of the things they'd always wanted to before they die.

P.S. I Love You. A movie about a woman whose soulmate dies, and who leaves her love notes that she reads after he's gone.

What is this, freakin' Cancer Week at the Cineplex? Do I get free Milk Duds if I show them my PET scan? I'm not even going to bother looking it up, because I'm sure the 30th anniversary revival of Brian's Song is playing at the Criterion Cinema downtown.

We'll do dinner, but the movie is still up in the air. If anyone has a recommendation for something non-cancer related that's playing now, send us an e-mail before this afternoon. Jeepers.

Thursday, January 17, 2008

The Blog Begins

Today I'm feeling: Just Fine.

Hello everyone.

As Isabel and/or I have explained, I'm starting this blog to
(1) Keep family and friends updated so they don't have to feel guilty or intrusive about asking how I am;
(2) give me a way to work through some of what I'm dealing with; and
(3) maybe (who knows?) provide some information to someone else out there who's going through the same thing.

That "same thing," of course, is Non-Hodgkins Lymphoma. I learned about the diagnosis three days ago; I'll post something soon about the experience of getting the news. About a month ago, we discovered a swollen lymph node in groin near my hip bone, and when it didn't go away with antibiotics, I had it removed and biopsied a little over a week ago. The initial analysis shows it to be Follicular Lymphoma, category 1, maybe a little category 2 (these describe how far along the lymphoma is -- 1 is the earliest).

I'm currently in the middle of staging, trying to determine if the lymphoma is isolated in that single lymph node area, or if it has spread elsewhere. This lymphoma often goes to the bone marrow, other lymph nodes, or to organs in the abdomen.

Yesterday, I had a bone marrow biopsy. The procedure is about as pleasant as it sounds: they suctioned out three vials of bone marrow and one bone sample from my lower back/upper hip. I'll write about that soon, too. Next Wednesday, I'll go for a CT scan and PET scan. These will help determine where the lymphoma is active. The PET scan involves being injected with a sugar solution. Active tumors consume lots of sugar to fuel their growth, so these areas will show up on the scan (if there are any).

Once we're done with those tests, we'll know what we have, and we can determine the best plan for treatment.

Now, about the blog:

I really wanted to call this blog "Lymphomaniac." However, as I learned when I set it up, there is already a Blogger-hosted blog with that name. I was extremely disappointed to hear this. Worse, whoever has the rights to the name has deactivated the blog, so I can't even look at it see how much better mine will be.

Even worse still, the name is so unoriginal that there are actual "I'm a Lymphomaniac" t-shirts available:
When I discovered that, I was profoundly disappointed, to say the least, about how late to the game I am with this whole "Lymphomaniac" thing.

So I 'm going with "Lympho Bob," which is OK, I guess. I like that it kind of echoes "Sponge Bob." It would be better if I had something to equal the "Square Pants" part. Sponge Bob Chemo Pants, that kind of thing. But with more pizzazz. I'm open to suggestions.

I also went with this particular template for the look of the blog because of the lime green color of the main header. The support ribbon for Non-Hodgkins Lymphoma is lime green. Well, it used to be. Maybe. Or it might have been something else like goldenrod yellow, or purple. The history and politics of cancer support ribbons is fascinating, and I'll write about that soon, too.

I'm off to see the surgeon to follow up on the biopsy -- make sure the incision looks OK. (It does from what I can tell).

Check back often. I'll have more to say. And feel free to leave comments.

And, of course, thank you for all your support.