I've covered this topic before, though it's been a while: the insensitive things that people say to someone with cancer, usually in an attempt to be sensitive.
(There -- I've already revealed my take on this whole subject. I always give people the benefit of the doubt, and assume they want to say the right thing, but just don't know what that is, or are too thrown by the whole "cancer" thing to think rationally. I know there's a real possibility that people who say insensitive things are just jerks. But giving them the benefit of the doubt helps keep me sane.)
The most recent discussion I have seen of this was just few days ago, from Hillary St. Pierre, a nurse and "Patient Advocate-Activist," as she is listed in her article, "Things to Never Do When Someone Tells You They Have Cancer."
I like her opening: "The first time someone uttered the words, "You still have hope" in response to my cancer, I almost slapped them. When an RN said these words -- meant to comfort me -- I raged. I was planning on a little more than hope."
Nice attitude. I love a fighter.
St. Pierre lists 17 things you should not say or do in this situation. I'm always amazed -- though I know I shouldn't be -- that I've had so many of the same things said or done to me. It's a universal experience, which is comforting, in its way (if you consider knowing that so many other people have cancer, and that so many other people are dumb or insensitive, at all comforting).
Some of the experiences I have in common with St. Pierre:
2. Do not say, "Oh, my great aunt Millie's cousin (or whoever) died from that." Yeah, I've gotten that one a lot. I think it starts as an attempt to connect -- this person talking to you has had experience dealing with the situation you are in. But it breaks down quickly. It's supposed to be an expression of concern, I guess, that you will also have a hard time. I had someone tell me (as I was going through treatment) that her great Aunt Millie's cousin probably would have survived, but it was probably the chemo that killed her. Gee, thanks.
7. Do not ask if the disease comes from something the person did (Ex: "Don't people with STDs get that?"). Well, I've never had the STD thing come up, exactly, but I have been asked what caused my cancer. "I don't know, and it doesn't really matter" doesn't seem to get them to stop probing. This, too, I think is a genuine expression of concern, as if knowing what I did to get NHL might also make it go away, if only I stopped. And, hey, if I could stop my body from producing an excess of B cells, I would.
8. Do not suggest asparagus, shakes or any other miracle cure that is "proven to work." Got this one, too, from someone who suggested she was in an industry that would know that it worked. She suggested some weird fruit juice that cost $60 a quart. Sorry. Not enough proof for me to spend that kind of money. I'm not desperate enough (yet).
12. Do not start on a rampage lecture about how someone somewhere has the cure and is hiding it in a conspiracy theory to make money from your suffering. While I, too, recognize the problems with income disparity in this country, and believe that those in power sometimes do things to remain in power, I cannot believe that someone is holding off on revealing a cure. I've met too many people who work on finding a cure for cancer because they've lost a loved one (or two) to cancer, and I can't believe that they would ever hold back on letting the world know about it if they'd found a cure.
St. Pierre offers some very sane advice for what to do/say instead. To sum up: Take a deep breath. Admit it if you don't know what to say. Be honest and open, and put the needs of the cancer patient first.
It's all good advice. And, to other patients, I say again: give people the benefit of the doubt. In the end, there's nothing truly good that can be said about cancer, or to a cancer patient. Let people's insensitivities slide. Put your energy into getting better, not seething at someone else's mistakes.
Wednesday, November 16, 2011
Monday, November 14, 2011
The Body's Secret Army
The official Nobel Prize web site recently posted a very cool video called "The Body's Secret Army," which explains how the immune system works.
The very cool part? It features explanations from a bunch of researchers who have won the Nobel Prize for their work in helping us understand the immune system.
The video begins with some history of immunology (the study of the immune system), and then moves on to more recent developments in the field. One of the developments discussed is monoclonal antibodies -- like my old pal Rituxan (though Rituxan isn't mentioned specifially). It's interesting to see how Rituxan fits in with immunology -- basically, how a monoclonal antibody does the job that the body's immune system should do (but can't).
In fact, there's quite a bit in the video about cancer, and the role that the immune system plays (or fails to play) in malignancies. I was especially fascinated by the segment on how monoclonal antibodies are being used for cancers other than lymphoma.
Neat stuff. The video is about 30 minutes long, and slightly graphic in at least one place (a woman's swollen face). But I recommend it as a nice way to increase your knowledge of how your own body works (or doesn't).
The very cool part? It features explanations from a bunch of researchers who have won the Nobel Prize for their work in helping us understand the immune system.
The video begins with some history of immunology (the study of the immune system), and then moves on to more recent developments in the field. One of the developments discussed is monoclonal antibodies -- like my old pal Rituxan (though Rituxan isn't mentioned specifially). It's interesting to see how Rituxan fits in with immunology -- basically, how a monoclonal antibody does the job that the body's immune system should do (but can't).
In fact, there's quite a bit in the video about cancer, and the role that the immune system plays (or fails to play) in malignancies. I was especially fascinated by the segment on how monoclonal antibodies are being used for cancers other than lymphoma.
Neat stuff. The video is about 30 minutes long, and slightly graphic in at least one place (a woman's swollen face). But I recommend it as a nice way to increase your knowledge of how your own body works (or doesn't).
Saturday, November 12, 2011
Paps
OK, I know in a cancer blog you might be expecting "Paps" to refer to something else, but I'm writing about Jonathan Papelbon, the now former Red Sox closer, signing with the Phillies.
I'll admit, I'm going to miss him. Even though I saw one of his few big blown saves live, in a playoff game no less, I'll always love him for 2007 -- both his many saves and his Riverdance with Dropkick Murphy's, in a kilt, during the parade after they won the Series.
(And if you're looking for a cancer connection in all of this, Dropkick provides it. They gave our family a big lift a couple of months after I was diagnosed. Look it up in the Lympho Bob archives. March 2008.)
As much as I appreciate all of Paps' saves, and his Riverdance, I think what I'll miss most is his entrance. Imagine it's the top of the ninth at Fenway, the Sox have a small lead, and they're three outs away from a win. There seems to be some hesitation on the bench before the Sox fielders jog to their positions. And then you hear the opening chords to Dropkick's "Shipping Up to Boston": DUH DUH...DUH DUH...DUH DUH....And Papelbon pauses at the bullpen door, fists bumps the police officer assigned to guard the bullpen, and then sprints from the bullpen, all alone on the field, to the mound.
As cool as it is on video, to see it live is just amazing. 30,000 fans on their feet when the Dropkick song comes on, then clapping to the music, so completely pumped up with confidence. I hope Philly fans get that same experience. And I'm glad, a couple of months ago, I got to experience it live with my boys. It's a very cool memory.
Good luck, Paps. Thanks for the memory.
I'll admit, I'm going to miss him. Even though I saw one of his few big blown saves live, in a playoff game no less, I'll always love him for 2007 -- both his many saves and his Riverdance with Dropkick Murphy's, in a kilt, during the parade after they won the Series.
(And if you're looking for a cancer connection in all of this, Dropkick provides it. They gave our family a big lift a couple of months after I was diagnosed. Look it up in the Lympho Bob archives. March 2008.)
As much as I appreciate all of Paps' saves, and his Riverdance, I think what I'll miss most is his entrance. Imagine it's the top of the ninth at Fenway, the Sox have a small lead, and they're three outs away from a win. There seems to be some hesitation on the bench before the Sox fielders jog to their positions. And then you hear the opening chords to Dropkick's "Shipping Up to Boston": DUH DUH...DUH DUH...DUH DUH....And Papelbon pauses at the bullpen door, fists bumps the police officer assigned to guard the bullpen, and then sprints from the bullpen, all alone on the field, to the mound.
As cool as it is on video, to see it live is just amazing. 30,000 fans on their feet when the Dropkick song comes on, then clapping to the music, so completely pumped up with confidence. I hope Philly fans get that same experience. And I'm glad, a couple of months ago, I got to experience it live with my boys. It's a very cool memory.
Good luck, Paps. Thanks for the memory.
Wednesday, November 9, 2011
Wider World
I want to give another plug to Betsy de Parry, who has done so much to publicize the problems of cancer patients. She's done it with books (including her new one), webcasts, and now on TV.
Betsy will be part of the PBS show A Wider World, which focuses on people with disabilities; the show will now feature regular segments on cancer issues, with experts from the University of Michigan.
The first segment aired a couple of days ago. Betsy's website lists days and times when different PBS affiliates show A Wider World, plus a link to the show's YouTube channel in case it's not shown locally.
I'm all about publicizing accurate cancer information these days, so I'm happy to see something like this happening. As always -- well done, Betsy.
Betsy will be part of the PBS show A Wider World, which focuses on people with disabilities; the show will now feature regular segments on cancer issues, with experts from the University of Michigan.
The first segment aired a couple of days ago. Betsy's website lists days and times when different PBS affiliates show A Wider World, plus a link to the show's YouTube channel in case it's not shown locally.
I'm all about publicizing accurate cancer information these days, so I'm happy to see something like this happening. As always -- well done, Betsy.
Sunday, November 6, 2011
Scanxiety
Any cancer patient will know the feeling, even if they don't know the word -- in my support group, it's called "scanxiety" -- the anxiety that comes from having a CT or PET scan scheduled real soon.
It's not the scan itself that causes the anxiety (though sometimes the process of having a scan is less than pleasant); the anxiety comes from not knowing what the results might be.
Of all the advice I've seen about dealing with scanxiety, I think some of the best advice is from Laura Dolson, who maintains a site on gyn cancers. Dodson calls it "Test Anxiety," and says there are two ways to deal with it: confrontation or distraction. With confrontation, you deal with the situation head on. With distraction, you push it out of your mind as much as possible. They both work, and sometimes they even work together. Dodson offers some excellent practical advice for using both strategies.
It's funny -- when I get a scan, I use distraction. To me, there's no sense in worrying. The scan is going to happen, and the results are going to come in, and there's nothing I can do to change that, so I try not to even think about it until it's over and I need to do something.
On the other hand, I think I approached my treatments with much more of a confrontation attitude. I didn't fret over them. I knew it was time to battle, and I met that enemy head on.
So we all deal with things in whatever way makes sense for each of us. I've come to believe that with cancer, there are no right ways for everyone to do things, just right ways for each of us individually. Whatever decision gives us peace is the right decision.
It's not the scan itself that causes the anxiety (though sometimes the process of having a scan is less than pleasant); the anxiety comes from not knowing what the results might be.
Of all the advice I've seen about dealing with scanxiety, I think some of the best advice is from Laura Dolson, who maintains a site on gyn cancers. Dodson calls it "Test Anxiety," and says there are two ways to deal with it: confrontation or distraction. With confrontation, you deal with the situation head on. With distraction, you push it out of your mind as much as possible. They both work, and sometimes they even work together. Dodson offers some excellent practical advice for using both strategies.
It's funny -- when I get a scan, I use distraction. To me, there's no sense in worrying. The scan is going to happen, and the results are going to come in, and there's nothing I can do to change that, so I try not to even think about it until it's over and I need to do something.
On the other hand, I think I approached my treatments with much more of a confrontation attitude. I didn't fret over them. I knew it was time to battle, and I met that enemy head on.
So we all deal with things in whatever way makes sense for each of us. I've come to believe that with cancer, there are no right ways for everyone to do things, just right ways for each of us individually. Whatever decision gives us peace is the right decision.
Saturday, November 5, 2011
Lymphoma Stinks
So I went out for my Saturday morning run today. I was up at 6:00, and hoping to get out by 6:30, because my daughter's first basketball game (a scrimmage) was this morning. Isabel is coaching her team, and I needed to get them up by 7:30.
It was very dark and very cold at 6:30 this morning. But that was OK. I felt good about running, I'd slept well, and I had enough energy to decide to run a route that would be a little bit challenging. So I left my driveway, ran down the street, feeling good. Some downed branches blocked the sidewalk a few houses down from mine, so I moved out into the street. Still feeling good, and then....I stopped dead in my tracks.
About ten feet in front of me, a large skunk crossed the road. He (she?) stopped in the middle of the street and turned to look at me. I live with an animal lover, so I know to look for certain signs of distress in the skunk: stomping his feet, standing on his front legs -- these are not good signs.
But this skunk didn't do that. He just stared at me. I took a couple of steps backward. Satisfied, he kept on walking. I turned and ran really fast in the other direction.
I didn't do the challenging route I had planned (since a skunk was likely to be hanging out along there somewhere), and, full of adreniline, I ran much faster than I had planned and pooped out halfway through the run.
This is a cancer blog, but I can't really connect all of this to cancer in any way, other than to say:
It was very dark and very cold at 6:30 this morning. But that was OK. I felt good about running, I'd slept well, and I had enough energy to decide to run a route that would be a little bit challenging. So I left my driveway, ran down the street, feeling good. Some downed branches blocked the sidewalk a few houses down from mine, so I moved out into the street. Still feeling good, and then....I stopped dead in my tracks.
About ten feet in front of me, a large skunk crossed the road. He (she?) stopped in the middle of the street and turned to look at me. I live with an animal lover, so I know to look for certain signs of distress in the skunk: stomping his feet, standing on his front legs -- these are not good signs.
But this skunk didn't do that. He just stared at me. I took a couple of steps backward. Satisfied, he kept on walking. I turned and ran really fast in the other direction.
I didn't do the challenging route I had planned (since a skunk was likely to be hanging out along there somewhere), and, full of adreniline, I ran much faster than I had planned and pooped out halfway through the run.
This is a cancer blog, but I can't really connect all of this to cancer in any way, other than to say:
But you already knew that....
Wednesday, November 2, 2011
Marcus Cannon Update
Last spring, I wrote about the New England Patriots taking a chance on a young man with cancer. Marcus Cannon was diagnosed with an aggressive form of NHL; he was projected to be a 2nd round draft pick, and the Pats picked him in the 5th round.
Last week, the NFL announced that Cannon had begun practicing with the Patriots. His chemo ended in June, and he took some time to rebuild his strength and make sure he was healthy. It's a nice story. As the NFL.com piece says, "So often, the only players in the spotlight are those who star on the field or create tumultuous Twitter drama. But Cannon's fight to get back to a simple practice required something from within that few of us ever will know."
The Boston Herald also ran a couple of pieces (a little more in-depth) about Cannon's comeback. One kind of gives the facts of his return. For the other, Karen Guregian wrote a nice column about the impact that Cannon's return has had on his teammates and on fans in general.
It's certainly cause for celebration. Of course, it would have been even more cause for celebration if he was a cornerback instead of a guard, given the way Pittsburgh picked apart the Pats secondary on Sunday. But, then again, Green-Ellis needed some help, too, so maybe Cannon can open up some holes for him soon .
One more article from that edition of the Herald that's worth mentioning: a piece about the "troubling trend" of the increase in cases of NHL. It appeared on the sports page because of Cannon -- plus former Patriot Joe Andruzzi and Sox ace Jon Lester -- having NHL. It's a short article, and doesn't give a more than the absolute basics in describing what NHL is. But at least it gives correct information for what it does provide. So they get a thumbs up for that.
I hope Cannon ends up making some impact, and proving to be an inspiration for NHL and other cancer patients. Good luck, Marcus.
Last week, the NFL announced that Cannon had begun practicing with the Patriots. His chemo ended in June, and he took some time to rebuild his strength and make sure he was healthy. It's a nice story. As the NFL.com piece says, "So often, the only players in the spotlight are those who star on the field or create tumultuous Twitter drama. But Cannon's fight to get back to a simple practice required something from within that few of us ever will know."
The Boston Herald also ran a couple of pieces (a little more in-depth) about Cannon's comeback. One kind of gives the facts of his return. For the other, Karen Guregian wrote a nice column about the impact that Cannon's return has had on his teammates and on fans in general.
It's certainly cause for celebration. Of course, it would have been even more cause for celebration if he was a cornerback instead of a guard, given the way Pittsburgh picked apart the Pats secondary on Sunday. But, then again, Green-Ellis needed some help, too, so maybe Cannon can open up some holes for him soon .
One more article from that edition of the Herald that's worth mentioning: a piece about the "troubling trend" of the increase in cases of NHL. It appeared on the sports page because of Cannon -- plus former Patriot Joe Andruzzi and Sox ace Jon Lester -- having NHL. It's a short article, and doesn't give a more than the absolute basics in describing what NHL is. But at least it gives correct information for what it does provide. So they get a thumbs up for that.
I hope Cannon ends up making some impact, and proving to be an inspiration for NHL and other cancer patients. Good luck, Marcus.
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