My New "Doctor"

I had an amusing cancer-related experience recently.


I got a haircut a few days ago. I was a little hesitant to go at the time of day that I did, because I knew I'd end up getting it cut by the same woman who did it last time. She's a Talker, and worse, a Know-It-All-Talker. I deal with enough of them every day at work; I don't need one cutting my hair. She also gets in moods where she gets a little insulting. It's overall not usually a pleasant experience. But I went at that time anyway, because it was going to be my only chance for a while to get a haircut (we're getting to the crazy time of year now, at work and with the kids' lives).


The last time I saw her, she noticed that I have a small bald patch at my hairline near the back of my neck. It's maybe as big as a nickel. I have one under my chin, too. I know they're there, and they don't bother me. (Interstingly, this kind of spot alopecia is an autoimmune issue -- something to do with T cell lymphocytes, from what I understand. Probably not related to lymphoma; I've never read read anything about that connection.)


Well, the last time she cut my hair, she saw the small patch, and for the next 10 minutes, repeated to me how important it was that I rush to see my dermatologist, because it could spread to my entire head. (Not true -- it's actually very rare that such a thing would happen.)

So when I went back to her a few days ago, I knew she was going to bring it up again, and I decided I would tell her I was a cancer patient and hope it would just shut off all conversation, the way it does with most people. (It's almost as effective conversation stopper as telling people I'm an English teacher.)


She started cutting, and sure enough, she brought up the alopecia. I stopped her with a, "Yeah, I know it's there...I'm a cancer patient....."


It didn't shut her up. Not for a second.


Without missing a beat, she said, "I knew it. I knew what it was from. What do you have?"


"Lymphoma."

"Yup. I knew it," she said. And then she was off: "I had a guy in here last year with a lump behind his ear I told him to get it checked but he said it was fine but I told him, you better get that checked and he said OK and he got it checked and he came back the next week and said [she paused here] You saved my life. So now I have a customer for life, you know? Not that I did it for that reason it's just the kind of person I am I can't let someone not know because you know that's how I am, but his wife was in last week you should have heard her going on, I mean, that's not why I do it, it's just the kind of person I am. I was in the health field at one time."


She went on for a while more about her sister-in-law who went back to school to study nursing, but only becasue she's in it for the money, and about the crafts she sells on eBay, but then she circled back around to my lymphoma diagnosis.


"You'll be fine. Blood transfusions. That's what you need," and before I could respond, she told me about her former customer (whose life she saved) and how blood transfusions have cured his lymphoma, and he's fine now. "Yeah, I could go into the health field -- but not like my sister-in-law, just for the money, but I like to help people. The problem is, I can't stand to hear someone whine because they have a little cut, you now?"


I finally got a word in, and asked her what she had done in the health field.


"I used to cut patients' hair in a nursing home."


She finished me up, and I paid and tipped her extra for the medical advice. "You'll be fine!" she called out to me as I walked out the door. "Blood transfusions!"

Ran a Race, Finally

This morning, I ran in the WPLR ShamRock & Roll 5K, sponsored by our local classic rock station, and benefiting the New Haven Diaper Bank, a very cool organization. I did OK -- an official time of 31:42, just over 10 minutes per mile, coming in 820 out of 1270 overall, 131 out of 157 in my age division, and #1, as far as I know, in the subvision of Old Fat Guys with Cancer. (As usual.)

Official results are here.

The 31:42 is the official time, but with such a huge field, it took a minute and 7 seconds to reach the starting line, so I'm putting myself unofficially at 30:35, five seconds slower than when I ran this race last year.

It was a beautiful 45 degrees and sunny at the start of the race. I was tired before I even began -- I lost an hour of sleep with the time change, plus we all went to a St. Patrick's day dinner/dance last night, and I helped with the set up and the break down, and then threw Catherine around the dance floor a little bit, so I was tired this morning. (That's me in the picture on the left with two of the teachers from the kids' school.) On top of that, I think the ear infection I had two weeks ago is coming back. So those are all of my official excuses, which every runner needs.

The ShamRock & Roll starts at Toad's Place, an iconic New Haven rock club, and goes up Prospect Street, about three-quarters of a mile straight uphill. I've been doing some hill training lately, so I managed to pass some people on the way up. The trip down was a little easier, and I actually had enough energy to pick it up near the end of the race and pass a few more people in the last few hundred yards.

So it was overall a good race, my first in more than 4 months. It was nice to run outside again and to push myself a little bit. Most importanly, I look good, as you can see. I need a nap, but it all felt good at the time.

Interesting Article

Nice article from CNN, "Where's the Cure for Cancer?"


The President is proposing billions more dollars for cancer research, with the goal of a cure for cancer. (His mom's cancer is no doubt playing into that decision.)


The article, though, brings up the complications that come with that noble goal: there are over 200 different kinds of cancer, all very different. (Heck, there are 30 different kinds of NHL, all extremely different from each other.) So finding "a cure" is going to be tough. Some researchers think a cure might even be impossible for some cancers, and a more realistic goal is to keep some cancers in check so that they are more like chronic diseases. Follicular NHL is often seen in that way -- chronic, so that it is treated as necessary.


I'm no cancer expert, but it seems to me that some of the research being conducted does hint at a common genetic trigger for a lot of cancers. I wouldn't want to abandon a search for a single cure -- it's from that research for a single cure, looking deep into a bunch of individual cancers, that we'll learn more about those individual cancers. I say, don't cut off any possibilities. Big gains come from big goals.

Vids of the Kids

This past weekend, the kids performed in the Connecticut Young Musicians Festival. All three played piano, and all did well.

As I explained about a year ago in a Lympho Bob entry, the YMF gives kids an opportunity to perform in a competition setting without the direct competition. They are judged on their performance, but not against one another. All three of the kids were complimented by the judges. They'll get their scores in three or four weeks.

Last year, I promised video of their performances. Alas, computer and video camera problems made that impossible.

This year, those problems are fixed. Enjoy the vids of my talented kids.

Here's Peter's performance:

And John's:

And, finally, Catherine's:

Scan Results

Well, I guess the summary for this visit is: No surprises.

As I said earlier this week, I've been able to feel that the nodes near my left hipbone are a little larger. The PET scan confirmed that. There's one that measues about 3.2 centimeters -- about an inch. That's not quite double its previous size, but it's certainly larger, maybe 75% bigger. Again, though -- no surprises to me.

There's a little activity in one node under my arm, but that's been there for awhile, and wasn't changed much on this scan.

So things seem to be progressing a little more than they had been. Nothing that's hugely worrisome to Dr. R -- not worrisome enough to start treatment right away. He recommends we continue to watch and wait, which I'm fine with. I'll go back again in a month for blood work and a physical exam, and then we'll do another CT or PET scan a month after that, if it seems necessary. And we'll evaluate from there.

As far as the treatment plan goes, it's still the same plan. We'll try Rituxin on its own, and see how that works, and then decide from there if we need to try something else. He's conservative in that way, which I appreciate. I'm still not showing any B symptoms, so he's not planning to rush into anything too harsh if it isn't necessary.

I'd call it a good visit, overall. Keeping in mind that this cluster of nodes might very well shrink again on its own (such is the unpredictable nature of follicular NHL), I'll just continue to monitor how I feel.

Of course, I'll keep giving you updates.

The scan

Interesting story from USA Today: "Cancer Patients Who Do Research Get Newest Drugs." The title is pretty much what the article says: patients who take the time to do research about the latest developements in treatments are more likely to have them prescribed. Sometimes they're even prescribed off-label -- drugs that are approved for advanced cancers are given for earlier stages.

Which is why I pay so much attention to these things. I need to be an advocate for myself. I trust Dr. R a lot, but I want to make sure he's thinking about everything he should be thinking about. (In my humble opinion.)

I also do all of that research because I'm a big nerd. But that's another matter entirely.

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The scan went OK yesterday.

It was indeed a PET scan, not a CT. I hadn't had a PET since last April, apparently (I haven't gone back through the blog archives to confirm, but that seems about right). The PET is more involved than the CT. I had to drink my Barium milkshake and then lie still for an hour, calming my metabolism so that only the cancer cells would show up on the scan as being active. Then I was in the tube for about 30 minutes with my arms stretched out behind me. Once again, my shoulders fell asleep and I spent the half houring fighting intestinal distress. But overall, it was alright.

As she was preparing to put an IV line into my arm, the PET technician asked how my veins were. "Excellent," I said. "My excellent veins are one of the few things I really have going for me right now." So I got a little bit of a laugh, anyway.

I'll see Dr. R on Friday for the scan results, unless he calls before then. From what I remember, CT results come in pretty quickly, but PETs take a little longer to read and analyze.

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My online support group's web site has been down for a couple of days. Apparently, the owners were doing some kind of software upgrade.

As of this writing, I still can't post anything, but I can read what others have already written. Which means I can't share stories of my intestinal distress with others who have been there. It seemed like I was stuck with telling you, but I decided I'd hold off. I gave my brother a little bit of it on the phone last night. That satisfied my need to chat.

Cool Story (and update)

I thought this was a really neat story:


It was published in the Baltimore Sun recently. It's written by a volunteer who takes stem cell and bone marrow transplant material across the country and even across the world.


Stem Cell Transplants come in two varieties -- "auto," which means the patient's own stem cells are removed and then reintroduced after heavy chemo (one hopes) has wiped out all of the cancer; and "allo," which means a patient must find a match and then have the new cells from the donor introduced after the chemo. Sometimes, the patient can get an allo stem cell match from a family member. Otherwise, they need to go to an international stem cell donor directory to find one. There are about 5 million people on the registry waiting to help.


The author of the story tells some tales about the problems of traveling (it's a story from the Travel section of the newspaper), but it does its job of publicizing how important these couriers are.


Read it here.


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Peter was in a regional spelling bee yesterday. He won his school's 6th grade spelling bee, so he went to the regionals. Unfortunately, he lost. If he'd won, he would have gone to the state bee.


He came in 5th place, which was very good, but he was disappointed. He knew the word that he missed.


To give you a sense of how hard the sixth grade words were: the 4th and 5th grade bees both lasted over an hour. The 6th grade was just under 15 minutes. Peter was knocked out in the 4th round, and the 4th, 3rd, and 2nd place finishers all got knocked out immediately after him.


We were there for the whole thing, including the 4th and 5th grade bees. It all took a lot longer than we expected it to, and sittiong around for two and half hours probably didn't help the sixth graders. John fell asleep for a half hour. We got Catherine a snack -- a six pack of Oreos. She ate the cookie parts and sculpted small animal figures from the creme filling, and played with them to keep herself busy.


Which was disgusting.


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I go for my scan tomorrow.


I thought it was going to be another CT scan, which takes about 5 minutes, but I looked at the instructions again, and it says it's a PET scan, which means 30 minutes in the machine, plus an hour of sitting around without moving while the radioactive barium milkshake makes its way through my veins. Fun times ahead.


As with my previous scans, I have no idea what to expect for an outcome. I feel pretty good overall, though I've had one nagging illness or another since New Year's Eve, so it's hard to know now whether I'm really feeling "normal." The cluster of nodes near my hip that's been swollen for a year seem a little more swollen to me, but it might be a reaction to lingering illenesses, or it might be the lymphoma, but not enough to worry about.

Basically, it's all just the usual pre-scan anxiety.


Whatever will be, will be. I'm prepared for whatever the results are. As I've said before, there's really nothing they can say to me that will be a shock at this point.

I'll have results in a few days when I hear from Dr. R. I see him on Friday, but he's usually pretty good about calling with results once he gets them.