Sunday, January 31, 2010

Chicken Cacciatore

We had a wonderful dinner last night -- chicken cacciatore, rice, and roasted vegetables.

It was delicious, but the really wonderful part was that we didn't even make it ourselves. Some friends made it for us and delivered it to us. We've known these folks for a long time; one of their sons is a classmate and teammate of Peter. They knew we were having a rough week last week, with Peter's broken finger, Isabel's mom's broken shoulder, and my starting treatment all piling up within a few days. So they aksed if they could make us dinner.

At first, we resisted, to be honest. We know the ritual of making dinner for people who are going through rough patches, especially illness. We've done it for others. But we really didn't need someone to make dinner. Easy enough to order pizza -- we do that often enough on a weekend night. But we also know that this isn't just about the food. It's about making a connection. And we really appreciate that.

I've read articles about therapists asking cancer patients to think about the good things that can come about from having cancer. That's not an easy thing, when you're in the middle of it. But then cancer patients realize that, well, "having cancer has finally gotten me to stop smoking," or maybe "it's gotten me to appreciate how hard my mom has always worked."

For us, the whole cancer thing has made us realize how blessed we are to have so much support, not just from family, which hasn't been surprising, but from the friends we've made here. Not having family immediately close by (especially when we know so many people who do) is hard sometimes. And at time's we've felt a little isolated. We have plenty of friends, and nearly all of them have kids, the same age as ours, maybe some a little older or younger. But that also means they're mostly in the same kind of situation as us -- busy as heck, and so we don't get together as often as we'd like. And so it's been easy to forget about the connections we've made with other people here over twelve years.

And then we have a week like we had, and we realize that those connections are still there. The good folks who made us dinner weren't the only ones who have offered -- they were just the ones who were most insistent, and who wouldn't take No for an answer. (For those others who have offered -- please don't take it personally. We hope that we won't have to call on you, but we know we can, and that feels great.)

When Isabel was being pulled in three directions -- being with her mom, being with Peter for surgery, and being with me for my second treatment -- we had four people volunteer to drive me to the doctor and sit with me for four hours. That was a great comfort. And that doesn't even include my mom and my brother, who have also volunteered.

So we had a wonderful dinner last night. Besides the cacciatore, rice, and veggies, it also came with a vase of flowers, a chocolate cake, a list of ingredients to show what was safe for our food-allergic son, and (because the cake wasn't safe) a large jar of Skittles and Swedish Fish, because those things are safe, and they're his favorites, and our friends took the time to find that out.

So, cancer, on the whole, pretty much sucks, but there's a whole lot of good that shines through -- so brightly that you don't even need to go looking for it on your own.

Friday, January 29, 2010

Another Good Treatment Day

Had my 3rd Rituxan infusion today. Like the last one, it went well. No allergic reactions, and it was over in less than three hours.

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Dr. R's office was a bit on edge today. The receptionist seemed frazzled. No witty banter with the nice woman who took my blood, who wasn't even playing the classic R & B radio station she usually has on. And then the nurse who took my vitals saw Dr. R stroll past the exam room, and whispered to me, "I'd like to strangle him!" while mimicking the activity with her stethoscope. I was a little taken aback, because Dr. R is such a sweetheart. She told me, "He was in early today, and she's just been sitting around, so when he sees one of his patients, he rushes us to get finished." Then she rushed through taking my blood pressure, pulse, blood oxygen, and temperature, and thanked me for listening as she hustled me to another exam room.

We had the potential for a difficult day....

But when I saw Dr. R a minute later, he was in a happy mood. Just anxious to see me, I guess, even though no one else was in quite as enthusiastic a mood. (Strange how a doctor's office can be so different at a different day and time. I almost always have appointments with him on Tuesdays at 1:30 in the afternoon; this Friday morning stuff is a whole different world.)

Dr. R said my blood work was "solid," which is a good thing, of course. Had my blood counts changed for the worse, it would be a sign that the Rituxan isn't working. But they're still within the normal range that they have always been.

He asked me if I'd been feeling any different. I told him that I though the Rituxan was working, and mentioned a couple of physical signs, apart from the size of the nodes, that I'd been noticing that seemed to indicate that things were working. He said that was a good, but that he was going to wait until next week to do a full physical examination of my lower abdomen. Basically, the Rituxan is about a week behind schedule, so this, my third week, would just begin to show signs of my second infusion. He says it's still early to look and decide if it's working after just two weeks. I'm OK with that -- I don't want to look at it and say "Nothing seems to be happening," and get discouraged, and neither does he. Waiting until next week will give us a more accurate assessment.

There's a whole lot of waiting involved with this lymphoma, isn't there? I've been waiting for two years. Seven more days won't be that tough.

I asked about extending the treatment to 6 or 8 rounds, as he suggested might be a possibility. He said we'd evaluate that next week, too. If it seems to be working, we'll extend to 6, and possibly 8. If it's not working, we'll stop at 4. It's rare to go beyond 8, since Rituxan's only real long-term (but reversible) side effect is a slightly lower immunity, because it targets normal B-cell lymphocytes as well as cancerous ones. Stopping gives the immune system a chance to recover.

I asked about Rituxan maintenance as well. R-maintenance involves extending the Rituxan treatment if it has been successful: in six months, I'd have 4 more rounds, and then repeat that again two more times in six-month intervals. As he said (and which I knew), there is some evidence that Rituxan maintenance is effective if the initial treatment has been successful. We have some time to decide that, obviously, but I wanted to get a sense of what he felt about the idea.

After an abbreviated exam, I was off to the treatment room.

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It's probably in poor taste to say a treatment room is "dead," but I was the only patient in there until about noon.

For the third straight week, I wore my lucky Jon Lester Red Sox shirt, but today I had my BU hockey jersey over it. One of the nurses saw it and signaled to me from inside the nurses station and said "BU!" and gave a cheer. I figured she wasn't a grad, since they closed their nursing school a while ago. Turns out her sister and brother-in-law went to BU, where he was equipment manager for the hockey team. She told me he taught his five-year-old son to say "BC sucks The Big One!" I told her I was kicked out a BU/BC hockey game for saying something similar about BC players, which is true. But that's another story for another blog.

The infusion itself went fine. Tylenol and Benedryl beforehand. The nurse said that next week, they may give me Benedryl pills, rather than the drip, which will make me "a little less loopy." I slept for an hour or so after I got the Benedryl, but that was all. When I got home, I slept for another hour, and I'm still a little groggy, but otherwise OK.

So next Friday, I hope to have more to report, on how the Rituxan has been working, and where we'll be going from here. But it at least seems to be going well.

Wednesday, January 27, 2010

Important Discovery

Last week, researchers from the British Columbia Cancer Agency (You go, Canada!) announced a very important breakthrough in lymphoma research. A description can be found here, but I'll do my best to explain.

Cancer researchers have been focusing for a while on genetics, and the mapping of the human genome a few years ago has made this kind of research much easier. It's important because once researchers understand which genes are mutated, they can target treatments toward specific cancer cells and leave other healthy cells alone.

The researchers found that genes from cells for two types of lymphoma (Follicular, the most common indolent lymphoma, and Diffuse Large B-Cell, the most common type of aggressive lymphoma) both have the same gene mutation. They found the mutation in a gene that is labeled EZH2.

Apparently, gene mutations are usually found in lots of different genes. No one had noticed before that this particular gene has been involved in lymphoma (though it has been implicated in breast cancer and prostate cancer), or that the exact same gene is involved in so many patients.

The upside is that this may lead to new and improved, targeted treatments for fNHL. The discovery itself is major news. Not much more to say, other than "We found it!" And, of course, there won't be any new treatments in the very near future. But given what researchers have been able to develop from similar discoveries, it's a cause for optimism.

Monday, January 25, 2010

Stress Relief

One of my Facebook groups posted this link today:
"That’s Cancertainment!: 25 Great Songs, Books, Films, Albums, and TV Shows in which Cancer Plays a Major Role," from the website AVclub.com. Pretty interesting list. I've seen/heard/experienced a lot of them.

Frankly, though, I'm not in much of a mood to catch up on those that I haven't. Too stressful a week. Even the funny ones -- like the Tom Green Cancer Special or the episode of The Office -- don't hold much appeal.

That said, things are looking up. Isabel's mom has begun rehabbing her shoulder, which will be tough, but it's a step forward. Peter had his follow-up this morning for his broken finger, and the doctor said it looks good. He has a permanent cast on now (he chose black, and picked up gold and silver sharpies for people to sign with). He's in good spirits. And I continue to tolerate the Rituxan well. So we have reason to be positive all around. Sometimes that's hard, especially when things pile up all at once.

So in the spirit if being positive, I'm going to suggest that instead of looking at the "Cancertainment" link above, you watch this video instead: the song "Swim" by the band Jack's Mannequin. Their lead singer, Andrew McMahon, is a leukemia survivor, which makes the song all that much more poignant. If you need some inspiration to keep on, it's a good choice. (Thanks to Tom for sending me the link a while ago.)

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Still stressed?

Today is Bubble Wrap appreciation day, because Bubble Wrap celebrates its 50th anniversary this month.

What better way to relieve stress than to pop some?

What -- don't have any?

You don't need any. It's 2010, for cryin' out loud. (Click on "manic mode," and you won't need to click your mouse -- just run your cursor over it. Much more satisfying.)

Have fun.

Friday, January 22, 2010

What a Week.....

Quite the dramatic few days, beginning shortly after my last blog entry was posted, which is why I haven't posted since. It all seems to be OK now, but, my goodness.....

1) We got a call Tuesday morning from the school nurse; Peter hurt his finger playing basketball in gym class -- the right pinky. I'll skip the full details of the day, but an x-ray revealed that it was broken. He saw an orthopedist Wednesday morning, who confirmed it was broken, and said he'd need surgery, which he had this morning. The doc put in a couple of pins to help set the bone. He's in a temporary full hand cast and sling until next week, when he'll get a new (and we hope smaller) cast. That will stay on for 5 weeks, and then he may need a splint for a while after that.

This means that his basketball season is over, and it's unlikely he'll play piano in the Connecticut Young Musicians Festival in March. Plus, he'll miss his audition tomorrow for All-State Jazz Band, which he had a real shot at making.

The optimistic view of his music setbacks: he's got another year to audition for Jazz Band, and because he held such a high chair in the Symphomic Band last year, they'll reserve a seat for him this year without his having to audition, so he may still be able to play the concerts at Lincoln Center in NYC and at the Old State House in Hartford later in the spring.

Overall, he's in good spirits, though he's been home for two hours and he's already saying he's bored.

2) As Isabel was driving Peter home from the radiology place on Tuesday, she got a call that her mom had slipped on ice that morning and had broken her shoulder. Again, I'll skip the details, but she had surgery on Thursday afternoon, and it went well. She's got some rehab and physical therapy ahead of her, but reports from Maryland are that she's doing OK.

Keep her in your thoughts. And, as always, keep the caretakers in your thoughts, too. Isabel has been comforted with the knowledge that her sister, niece, and a couple of brothers are close by to help out, but she's still been very stressed out with the Trifecta she got this week. Because, of course...

3) I had my second round of Rituxan this morning. Naturally, Peter's surgery was scheduled for this morning, so Isabel was with him, and my mom came down to take me to the oncologist. (As much as she would love the ability, Isabel just couldn't be in three places at once -- a hospital in Maryland, a hospital in New Haven, and a doctor's office in Orange. Elastigirl from The Incredibles is her idol.)

This week's Rituxan infusion was much less interesting than last week's. It took about three hours altogether (2 less than the first round), with no reactions at all. In fact, the combination of the Benedryl and a lack of sleep this week pretty much knocked me out. I think I was awake for maybe an hour of the three hours that I was there. And I'm still tired.

Isabel's big decision, now that her mother, husband, and first-born all seem to be doing OK, is whether or not to nap first and then get drunk, or the reverse. As I look to my right, I see her asleep on the couch, so I guess that decision has been made. Once she gets John and Catherine from school, however, I'm guessing she'll move on to part 2.

Spread your positive thoughts and prayers around this week.

Tuesday, January 19, 2010

Best Treatment Plan for Follicular NHL?

All right, the whole First Rituxan Infusion thing went well, but it's time to get back to work.


If you're new to Lympho Bob, or you've started reading again after an absence, then you should know that I'm a cancer research geek, and I like to provide links to new lymphoma research here. Family and friends seem to like to hear about new developments, because it gives them hope, and my fellow fNHLers who have found the blog seem to like being up-to-date on potential options.


I get these links from a couple of Facebook groups, from postings to my support group, and through my own research. Recently, someone in the support group posted an article from the journal The Oncologist from a year or so ago, called "Radiolabeled and Native Antibodies and the Prospect of Cure of Follicular Lymphoma." The full article is available here.


It's on the technical side, written for oncologists, but it was worth wading through. The article is a review of research on fNHL, looking especially at Rituxan and RadioImmunoTherapy (RIT -- Zevalin and Bexxar); those are the Radiolabeled (RIT) and Native (Rituxan) antibodies mentioned in the title. The basic conclusion of the article is that a combination of Rituxan (or some other native antibody), Zevalin or Bexxar, and some chemotherapy is probably the best currently available way to treat Follicular NHL. The big HOWEVER here is that the authors are speculating, based on previous research -- this isn't a report of new research. It amounts to a kind of "best practices" summary.

Rituxan, they say, has done wonders for the treatment of fNHL (which we already knew). And RIT has also been fantastic. What's great is that they work in two different ways. Combine either of them with chemo, which works in a third different way, and the results are even better. So maybe combining all three together in some way (Rituxan with the chemo, then conditioning with Rituxan before RIT) might the best shot we have at a cure, or at least a long-term remission for fNHL.


More importantly, both native antibodies and radiolabeled antibodies could fairly easily be improved. Rituxan is great, but fully-humanized antibodies (no more mouse fantasies!), or antibodies that target proteins besides CD-20, might mean even greater success. And RIT could be improved by playing with the ways the radioactivity is released (that's the real technical part of the article) and then giving repeat applications of it. Combine those improvements with chemo, and you have an even better chance at cure/long-term remission.

Or so they speculate.

A very interesting idea, and one that doesn't even consider the ways other improvements might help (like genetic testing helping to determine which of the chemo options might be best). Certainly something worth considering for an fNHL patient who is taking Rituxan and might be moving on the CVP, and who has an obsession with radiolabeled antibodies.....

Saturday, January 16, 2010

My Snuggy and Me

Well, Coco asked for a picture of me with my new leopard-print Snuggy, a gift from my brother, his wife, and my nieces.

As much as I wish I had a picture of me in the treatment room, having an allergic reaction to Rituxan, trying to stave off chills with my Snuggy, fantasizing about my wife dressed like Minnie Mouse -- I don't have one.

But here's a re-creation:








You're welcome, Coco.....

(And thanks, Isabel, for putting up with me.)