Saturday, October 31, 2009

Happy Halloween

Happy Halloween.
Looks like we're going to have a pleasant night tonight -- pretty warm temperatures. It reminds us a little of the warm Halloween night when Peter was two and a half. It was so warm that after we took Peter around to a few houses, we sat on the front porch to give out candy. Peter hadn't ever had "candy," like an actual chocolate bar, though he'd had plenty of cake and cookies in his short life. He asked us if he could have some candy. We had planned to just eat all of his candy ourselves, but we gave him a KitKat, thinking it was basically a cookie.
Naturally, he loved it. And craved more. "More candies?" he asked us, his eyes flickering with the need for concentrated sugar as he tugged nervously at his yellow firefighter's coat like a junkie pulling at his soiled t-shirt. We told him that one was plenty.
So he rolled on the front lawn, moaning, "More candies! More candies!"
It was like something out of One Flew Over the Cuckoo's Nest.
Anyway, here are the kids' costumes this year.

Catherine as Cleopatra. She keeps asking us about the real Cleopatra, but there's darn little we can actually tell her. The affairs with famous Romans don't seem right, and the whole suicide-by-sanke thing will give her nightmares. We just tell her Cleopatra was beautiful, ands that seems to satisfy her.
John is the Travelocity Gnome.
I still don't get the whole Gnome obsession, but he cracks up every time he even talks about it -- enough that he tries to quote a Travelocity commercial, but can't quite get the words out through the laughter.
He cracks himself up, which I totally respect.

Peter is just kind of carrying his own head around.

He's probably not going to actually wear this tonight, since it's a little hard to hold both one's own head and a full bag of candy. He wore it to a Halloween dance last weekend, and won first prize for Most Original Costume.

Kind of a long way from the whole cute little firefighter thing....

Thursday, October 29, 2009

Sweet Music

First, a musical update:

This past weekend, Peter played in the Southern Regional Band Honors Concert for Catholic schools in Connecticut. After his audition in September, he was awarded First Chair in alto sax, which basically means he was the best alto sax player in the band.
For this weekend's concert, First Chair was more of an honorary thing; sometimes it has more practical applications. In January, he'll audition for the State Symphonic Band. Two years ago, he was 16th Chair in the Symphonic Band -- a low chair, but pretty unheard of for a fifth grader to even make that band. Last year, he was 4th chair and just missed making State Jazz Band. This year, he's got a great shot at Jazz Band, and maybe at First Chair in Symphonic. He'd likely get a solo if he was First Chair, so that's his goal. (And if not, there's always next year...)

We're very proud of him.


Musical update #2:

Lympho Bob has gone electric.

Bought myself a Les Paul in September. I still pluck the acoustic guitar occasionally, but the electric is more fun right now. Plus, everything sounds better with distortion. And even if I don't sound great, I look freakin' awesome.

Third -- a shout out to Cliff Lee of the Phillies for the sweet music her threw last night.
Complete game, 10 strikeouts, no walks.

Not just because he's playing against the Yankees, but because his son was diagnosed with leukemia at 4 months old, and now Cliff Lee is a spokesperson for the Leukemia and Lymphoma Society. He's helped raise over $1 million in Philadelphia and Cleveland (where he used to play) for the LLS Light the Night walks.

His son is fine now, by the way.

Good luck, Cliff and your Phillies teammates.

Tuesday, October 27, 2009


The Smilow Cancer Hospital at Yale officially opened for business yesterday morning. That's a very good thing (for me and many others).

They actually had the dedication last week. I didn't attend, so I don't know if it was like the Open House for the St. Raphael's Hospital satellite cancer center that opened a mile from my house last year. (Isabel and I wondered then about what an open house for a cancer center would involve, and joked that Chemo the Clown might show up and make balloon animal lymph nodes. We were close -- the local paper showed a picture of a CT Scan machine with balloons on it.)

All kidding aside, Smilow looks like a wonderful facility.

Yesterday, the New Haven Register had a nice article about the new Physician-in-Chief, Dr. Thomas Lynch. You'd certainly expect him to be at the forefront of cancer care, and he is. He's pushing two very important, realted things:

First, he wants to see more cancer patients participating in clinical trials. This is especially important for lymphoma patients -- there are so many promising lymphoma drugs in the pipeline that need to be tested on actual patients. Lynch says that only 3% of cancer patients participate in trials now; he'd like to see that go up to 20%. Participation in clinical trials was apparently a big issue at the Lymphoma and Myeloma International Conference this past weekend in New York (I'm looking for some abstracts from L & M, and I'll try to share some soon.)

The other thing that Dr. Lynch is pushing is Personalization, which is something that makes me happy. He thinks clinical trials and personalization strategies are connected: more people may participate in trials if they have a better understanding of their own cancer's micro-environment. He wants to have all patients at Smilow undergo this kind of testing to have that information available. That should make it easier to match patients with treatments still in trial.

I like the approach. The are already some cancers that use that kind of information to determine whether a treatment is likely to work before it is even given. Saves lots of time, money, and pain for everyone involved.

I'm officially a patient at Yale, having seen Dr. C there a long time ago, so I guess that means I'm a patient at Smilow, too. I'd be happy to know more about my own micro-environment.

In the meantime, Yale is one of the top 20 cancer hospitals in the country, and Smilow might actually move them up a little on the list. I'm in a good place....

Saturday, October 24, 2009

Talking to Your Doctor

.....or Dancing with your doctor, as it were.

Someone alerted me to this video. It's a recent episode of the show Life (Part 2) on PBS. I've never seen it, but apparently it's sweekly show aimed at Baby Boomers.

The episode is called "Dancing with Doctors," and it focuses on having a good relationship with your doctor -- making sure you are getting the care that you need. A very important topic whether you have cancer or not. It's in three parts (30 minutes total). The first is a roundtable with doctors, and one is a former Hodgkin's Lymphoma patient, which adds a nice twist.

The second part is an interview with the actor Evan Handler. He's pretty recognizable -- played someone or other's bald, sweaty husband or lover or something on Sex and the City. He was diagnosed with a very aggressive leukemia when he was 24 and overcame it. He wrote a book about the experience called Time on Fire: My Comedy of Terrors.

Anyway, Handler basically survived because he was a self-centered jerk, and he decided that, given the kind of care he was receiving, the only way he was going to survive was to put himself first, not care whether anyone else survived instead of him, and see to it that he got what he needed.

I don't think I could be that aggressive, but I also have the "luxury" of having an indolent cancer, which has given me lots of time to think about what I need to do and what my options are. I hope I don't have to be a jerk, and I can let my knowledge of what's going on get me what I need.

Of course, I also have the luxury of having a good doctor who listens to me, which is pretty nice.

Anyway, Life (Part 2) looks like a pretty good show if you're a Baby Boomer, which I am not. (I'm an Gen Xer, which Peter has read about in the World Almanac for Kids; he thinks it's funny that Xers are "obsessed with pop culture." I don't know what he means by that. And fellow lymphoma survivor and Nodes of Gold recipent Mr. T says he pities the fool who thinks we're obsessed with pop culture.)

But Mr. T is a Boomer, and so is my brother, so they can both scan all of that advice on the PBS web site about "Fighting Agism" and whether getting old is funny. I may have cancer, but I'm still young.

Thursday, October 22, 2009

Will and the Way

My friend Will sent this message to a bunch of us on a writing message list Monday. As you'll read, it was his birthday, and he's recovering from a recent liver transplant, brought on by liver cancer.

Will and I work together. He writes poetry, and writes about technology, and about J.D. Salinger, who wrote The Catcher in the Rye -- one of my favorite books by one of my favorite writers. And despite his being a Yankees fan, I still like Will a lot. We've unfortunately found more in common with one another lately -- like stories about nightmarish PET scans.

Anyway, Will's post pretty much speaks for itself:

I generally avoid my birthday and have avoided talking about health probs, but not today. As I turn 57, I want this list to know that I am three weeks into recovering from a liver transplant. It’s an amazing gift of life.

I was diagnosed with Primary Liver Cancer (hepatocellular carcinoma) on Dec 24 2008, operated on two weeks later, but too much cancer was found to remove surgically. My only chance of continuing my life was a transplant. In case you don’t know, there aren’t enough organs to cure folks in need of them and I’m hoping my experience will inspire us to donate our organs upon death. I feel as if I have added a new spirit to my soul because some 41 year old man from the Bronx had the kindness and love for others to become an organ donor. I had the benefit of the top docs at Mt. Sinai Hospital in NYC, a good healthcare plan, and a very supportive school, and I have the greatest wife in the world (and I’m not just saying that because I get lasagna and chocolate cake tonight).

The hardest part was waiting and knowing there are not enough organs for all those who need them—so if you haven’t done so already, PLEASE consider making yourself an organ donor. It’s a beautiful way to help others and I really feel that my donor’s spirit lives with mine now. I want to pass on the help he has given me even though I can never do as much for others as what he has done, but have to come out of my health privacy and even birthday shyness to let all the good folks I know that my experience has been incredibly life affirming.

At the end of chapter 12 in The Catcher in the Rye, Holden claims “people are always ruining things” but by the end of the book he learns that may not be true, and that at least he doesn’t have to become a person ruining things...we can help each other in a very powerful way by simply signing on as an organ donor. If I’m the first TP person you know, please try to understand why I think it’s so important to give life when you allow your organs to be used after your death. I know it sounds a bit strange and possibly morbid, but I feel so joyful and thankful that I believe if I share this good grace, others may do so as well.

With love and respect, Will


I can no longer give blood, let alone donate an organ. So throw in an extra one for me when you sign the little card.

Tuesday, October 20, 2009


I have a confession to make.

....I have a Twitter account. I finally got to use "Lymphomaniac" as a handle, and I'm very excited about that. I can be tweeted at that address.

I have another confession.

....I haven't sent any tweets yet, and I don't really have any plans to.

If you don't know what Twitter is, it's a so-called micro-blogging service, but each "blog" entry is limited to 140 characters. I'm an English professor; I can't say "Good morning" in only 140 characters.

No, I need the wide-open, Kansas-prairie-like space of a blog, or a mega-blog, or whatever the opposite of a micro-blog might be, to flesh out the depths of my thoughts.

Anyway, in the couple of weeks since I've had the Twitter account (I'm using it for a research project), I've actually attracted a few followers, which I think is pretty funny, because I've offered nothing for them to follow except for the envy-producing name "Lymphomaniac."

One of my followers is the Lymphoma Research Foundation, a very cool organization that I've linked to a few times here, but never really highlighted (as far as I can remember).

LRF focuses on raising funds for lymphoma research and providing support for patients and caregivers. Some nice stuff on the site, including a series of videos and podcasts on different types of lymphoma (a video that I recently I linked to, focuisng on Follicular NHL, is up there). They also have a fantastic program called the Lymphoma Support Network, which connects new lymphoma patients with other patients, former patients, caregivers -- people who have been through it already. A very nice way of getting some support.

Finally, they have a sections called Stories of Hope, which features profiles of lymphoma patients who have fought and won their battles. One of the more recently posted profiles is of Betsy de Parry, whom I've writtten about before (she does the new series of podcasts for Patients Against Lymphoma). There are a couple of other familar faces there, too -- people I know from the support group (which is also a featured link on the LRF site).

This is one of those sites where you can click around for a while and keep finding new and interesting stuff. Highly recommended.

Tweet me about it if you visit and find something good. Just don't expect a response....

Saturday, October 17, 2009

Homecoming 5k

Ran another 5k this morning. Decent finish -- 29:28 -- about what I've been running lately.


The race is called the Bob Corda 5k, and it's part of Southern's homecoming festivities.I wasn't sure I was even going to run this one. They had been calling for nasty weather -- 40 degrees and rainy. Two friends dropped out Friday, thinking that getting up that early just wasn't worth it if they'd also be cold and wet.

But I stayed in, for one reason: last year's race was also cold, and it took place at 8:00 on the morning after Halloween. Small field, so I came in 3rd in my age group, and took home a $5 Dunkin' Donuts gift card for my trouble. I figured if the weather was nasty, I could take home another prize this year.


We had a busy morning: John had a soccer game in Branford at 9:00, and Peter had band practice in West Haven at 9:30 (in the opposite direction). The race was in New Haven at 8:00. So Isabel took Catherine to John's game, and Peter came along with me as my Official Support Crew. His duties included taking pictures of me at the start and finish. I'm sure it's just coincidence that there are no real usable pictures of me running, but he did take several nice shots of attractive female undergraduates.

The race began and ended at the student center, so Peter's duties mostly consisted of buying something at the Dunkin' Donuts and listening to his iPod for a half hour and staying out of trouble.


We had left home late, and arrived 15 minutes before the race started. My whole pre-run routine was thrown off. I had no time to listen to music, little time to warm up, and I forgot my Gatorade at home. I registered and tried to get warm (it was 38 degrees out at race time, but the rain held off.)

After I registered, I got my t-shirt. The woman giving them out asked Peter if he wanted one. "No thanks," he said. "Are you sure? They're free," she said. "No -- I'm good," he told her. "Peter," I said to him, "It's a free shirt--" he cut me off with "NO." We walked away from the table and asked why he was being that way. "I'm not wearing a shirt like that," he said.

Which is when I remembered that this year's homecoming theme is "A Fairy Tale Homecoming," and the shirt had a variation of the Princess Castle that served as the official logo.

OK, he's 12, and he's not much into princesses. We'll let the whole t-shirt thing go....


As I was getting ready to line up at the start, a man walked by with his daughter. She was about 7 years old. They were both running in the race. I was thinking to myself, "Well, I can probably beat her, anyway," when Peter said to me, "I got 5 bucks that the kid beats you."

Ladies and gentlemen, how about a big hand for my "support crew"....


I started out too fast, and had a whole bunch of people pass me, including two guys who were probably my age. But neither pulled out too far ahead -- maybe about 20 yards away from me.

About a half mile away from the finish is a nasty hill. Kills me every time. Just before the hill, I looked at my watch and thought, "I could finish this in under 28 minutes." Then the hill slowed me down. Considerably. After the hill, I thought, "I could finish this in under 29 minutes." Then I realized I had misremembered how much more running I still had to do, and I said to myself, "If I finish under 30, I'll be happy." I was just started to recover my breath from the hill.

I got to Founder's Gate, where you can start to see the finish line, and was trying to decide if I had enough left for one final kick to catch those other two 40-somethings in front of me, when I saw that they had gone off the course, taking a different (slightly shorter) path in front of the Arts Building. Obviously, this was their first time on the course, and obviously no one had guided them about where to go. So they still beat me, and probably won themselves DD gift cards in the process. It's an informal race -- no one was going to disqualify them.

And realistically, I probably wouldn't have caught them.


Peter and I had a quick post-race breakfast, and then I had to change my clothes and get him to band practice. I might very well have come in third for the 40ish men, but I haven't gotten a phone call or e-mail yet telling me where to pick up my gift card, so I'm probably not getting one.

Which is fine. The race benefits a scholarship fund, so it's better that we had a nice-sized field this year. Besides, I only race against myself.

My time of 29:28 comes to 9 minutes and 29 seconds per mile. Once again, I say: Not bad for an old fat guy with cancer.


By the way -- I beat that 7 year old girl.

By a lot.

Thursday, October 15, 2009


Probably the biggest fear among Follicular NHL patients is that we will "transform." That is, some of our slow-growing, indolent cancer cells will turn into fast-growing, aggressive cancer cells, usually a form of lymphoma called Diffuse Large B Cell Lymphoma (DLBCL). On the one hand, DLBCL has a pretty high cure rate when it's caught early. On the other hand, it isn't always easy to know you've transformed. Plus, curing the DLBCL doesn't get rid of the fNHL.

(Incidentally, one of the reasons for watching and waiting is to hold off on using R-CHOP or a similar chemo, since it is pretty effective on DLBCL, but can only be used once. It keeps that arrow in the quiver, as Dr. C, the lymphoma specialist, put it to me.)

The issue of transformation has been discussed a lot lately in the support group. I'm not sure what prompted it -- I think it was someone's worrying about it. Which happens a lot. About 3% of people with Follicular NHL will transform each year. That number seems to slow down as time goes on, so chances are reduced over time. There's been some deabte about what all the statistics mean, but the upshot seems to be that about a third of fNHL patients will transform at some point.

Anyway, in the midst of our support group discussion came an article in the hematology journal Blood. I can't get access to the article, so there's no link, but the very dense, technical abstract is below.

Even our resident expert Karl had a little trouble with the language in the abstract, without seeing the whole article, but what we think it all means is this:

We still don't know how or why fNHL transforms. Dr. C told me that fNHL is especially "genetically unstable" for whatever reason. The researchers who wrote the article believe that the cells that transform are more present in particular stem cells, and less in other mature B cells. If they are right, they may be able to identify early on which patients are likely to transform. It's possible that currently-used treatments could then be used on these patients. Or, given the way research has been going, a whole new type of treatment could be developed that targets whatever unique characteristics are present on these cells that makes them different from the slower-growing fNHL cells.

It's exciting research, I think -- cause for optimism. It seems to be part of the larger trend toward researching the micro-environment (finding out what makes each cancer cell different -- just as two lung cancers might seem outwardly alike, but were caused by two different gene mutations, so might fNHL also have that kind of basis). And this leads to the larger trend toward "personalization" -- being able to identify which treatments will work best for an individual patient.

Something worth keeping an eye on, to be sure.

"A pluripotency signature predicts histologic transformation and influences survival in follicular lymphoma patients."
Blood, 8 October 2009, Vol. 114, No. 15, pp. 3158-3166.
Prepublished online as a Blood First Edition Paper on July 27, 2009; DOI 10.1182/blood-2009-02-202465.


Andrew J. Gentles1,-, Ash A. Alizadeh2,3,-, Su-In Lee4, June H. Myklebust3, Catherine M. Shachaf5, Babak Shahbaba6, Ronald Levy2,3, Daphne Koller4, and Sylvia K. Plevritis11 Department of Radiology, Divisions of 2 Hematology and 3 Oncology, Department of Medicine, and Departments of 4 Computer Science and 5 Microbiology and Immunology, Stanford University School of Medicine, CA; and 6 Department of Statistics, University of California, Irvine.

Histologic transformation (HT) of follicular lymphoma to diffuse large B-cell lymphoma (DLBCL-t) is associated with accelerated disease course and drastically worse outcome, yet the underlying mechanisms are poorly understood. We show that a network of gene transcriptional modules underlies HT. Central to the network hierarchy is a signature strikingly enriched for pluripotency-related genes. These genes are typically expressed in embryonic stem cells (ESCs), including MYC and its direct targets. This core ESC-like program was independent of proliferation/cell-cycle and overlapped but was distinct from normal B-cell transcriptional programs. Furthermore, we show that the ESC program is correlated with transcriptional programs maintaining tumor phenotype in transgenic MYC-driven mouse models of lymphoma. Although our approach was to identify HT mechanisms rather than to derive an optimal survival predictor, a model based on ESC/differentiation programs stratified patient outcomes in 2 independent patient cohorts and was predictive of propensity of follicular lymphoma tumors to transform. Transformation was associated with an expression signature combining high expression of ESC transcriptional programs with reduced expression of stromal programs. Together, these findings suggest a central role for an ESC-like signature in the mechanism of HT and provide new clues for potential therapeutic targets

Tuesday, October 13, 2009

Another Good Visit

Met with Dr. R. Everything still looks good.

Physical exam: No new nodes popping up. In that same area near my hip, which has been the only spot where there's been any real action, he said there's some swelling, but "nothing like what we've seen in the past."

Blood work: All seems fine. Everything continues to be within normal range. The Red Blood Cell count was a little lower than it has been, but "nothing to worry about."

My self report: No B symptoms. I know if something doesn't feel right, and for now, everything feels OK.

Isabel had planned on coming, but she forgot about it and made an appointment for the same time. She felt bad about not being able to come. I told her she wasn't going to miss much, and I was right.

The only other issue we talked about was my getting an H1N1 vaccine. Dr. R thinks it would probably be a good idea to get one, but, given that I'm not being treated right now, my immune system isn't too compromised. They're not available around here yet anyway. So that's one more thing I don't need to worry about.

Next appointment is in 3 months.

Monday, October 12, 2009

Long Winter

Yesterday started as a fantastic day. It ended less well.

My brother called on Friday, saying he had scored four tickets to the Red Sox playoff game for Sunday. He wanted to bring me and the boys. Isabel was about to leave for a weekend in NY with her college roommates.

We left Sunday morning at 7am for the drive to Boston. Catherine would be spending the day at the mall with her aunt and cousin after a quick visit with her noni.

My brother drove us into Boston (he knew a great parking place near Fenway -- a skill that is not to be underestimated). The weather was beautiful, perfect for a game. As a bonus, we walked past the D'Angelos near Kenmore Square where Isabel and I had our first date (back when it was called "Whippersnappers.")

Peter is, of course, the world's biggest Red Sox fan, and lives and dies with their fortunes. John had never been to a Sox game, and was most excited by the prospect of his first sausage and pepper sandwich at Fenway.

The seats were great -- 3rd base side pavillion. We could see the field beautifully, and that section has limited seating and its own concession stand -- very short lines for those sausages. That's Peter and John with the Monster behind them.
It was a great game -- Boston's bats finally woke up -- right up until the 9th inning. If you don't know the details, go look them up yourself.

It was a quiet drive back to Connecticut. Peter perked up a little as we got closer to home. But then we made the mistake of listening to the Patriots game. Again, go find the deatils on your own.

Thanks to my brother for a great day, the final score notwithstanding. Thanks to my sister-in-law, niece, and mom for taking care of my girl.

I'd say thanks to the Sox for a great season, but....I love that hot stove....

Saturday, October 10, 2009

Up with RIT

The good folks at The Oncologist, a journal for, well, oncologists, have devoted a whole bunch of space to lymphoma articles this month, particulalry on Radioimmunotherapy (RIT), like Zevalin and Bexxar. If you've been reading for a while, you don't need the full RIT explanation -- you know it involves full body radiation, that it's pretty darn effective, and that I'm a big fan.

Zevalin was recently approved as a first-line consolidation therapy -- that is, it can be used as an NHL patient's initial treatment, when following chemotherapy. These articles build on that use.

You can't see the whole articles without a subscription, but the article summaries look pretty interesting.

The first one is called "Harnessing the Energy: Development of Radioimmunotherapy for Patients with Non-Hodgkin's Lymphoma." The authors are calling for more use of RIT (in this case, Zevalin) -- always a good thing -- by recommending ways that it can be used most effectively on different types of NHL patients. "Fit" patients can handle aggressive chemo + RIT, with the possibility of curing the NHL. "Compromised" patients would also benefit from chemo + RIT, though with not quite as aggressive a treatment as with fit patients, since they can't physically handle it. "Frail" patients could use RIT alone (since the chemo might be too much for them), to control symptoms. I don't think the article is offering any new research, but it is getting into the different factors that an oncologist should consider before giving RIT. I think it's useful as another way of encouraging RIT to be used more widely.

A second article also looks at RIT favorably: "Rationale for Consolidation to Improve Progression-Free Survival in Patients with Non-Hodgkin's Lymphoma: A Review of the Evidence" says that too many NHL treatments do not achieve a complete response (that is, wipes out the disease entirely, rather than just reducing it, even if it's temporary). The authors look at a bunch of articles that have been previously published, and bring all of that separate evidence in one place. What they found is that RIT consolidation therapy -- that is, chemo followed by RIT -- results in more complete responses than other treatments. This seems to be true whether the RIT used is Zevalin or Bexxar, and whether it's an indolent NHL (like Follicular) or a more aggressive type. Once again, I see this as a giant pillow that is being swung at the heads of oncologists who are hesitant to use RIT ("Wake up! Wake up! Try this please!").

Yet one more. The authors of "Radioimmunotherapy for Stem Cell Transplantation in Non-Hodgkin's Lymphoma: In Pursuit of a Complete Response" are also pushing RIT as a chemo substitute, this time as a conditioner for Stem Cell Transplants (SCT). Right now, patients are "conditioned" with aggressive chemotherapy -- that is, before a transplant, their immune system is basically erased. It is then replaced with new, clean immune cells. The authors believe that RIT could be combined with chemo during that conditioning, and might be more appropriate for certain patients like the elderly or those who have had many chemo tretaments before their SCT. The authors say that there have been good results with RIT as a consolidation therapy (combined with a less aggressive chemo than is usually used for SCT conditioning), with auto SCT (using the patient's own cells) or reduced-intensity SCT ("mini SCT"), since the RIT helps make up for the less aggressive chemo.

Lots of initials on that last one, but the point is the same: RIT can and should be used in ways that it isn't being used for right now.

I think what's especially important is that The Oncologist calls itself "The International Journal for the Practicing Oncologist/Hematologist." In other words, it's read by the people who work directly with cancer patients to make decisions about treatment. The kind of "piling on" of articles might make some of them take notice and give RIT some new consideration.

I know Dr. R would consider it. We talked about RIT early on. Not a whole lot of it done at Yale, but they have a little experience with it, anyway.

Speaking of Dr. R, I see him Tuesday. Wish me luck. (Not that I'm anticipating any problems. But you just never know.)

Wednesday, October 7, 2009

10 Commandments

Someone from my online support group posted this. Apparently, it's been around for a while, but I hadn't seen it before. I like it.


The Ten Commandments for Cancer Survival:

1. Thou shalt regard the word, "Cancer", as exactly that: a word. Nothing more, nothing less. For its original meaning has changed mightily over the years, as have such words as Smallpox, TB, and Polio, all once dreaded ailments, now non-existent as maladies. And thus, too, shall go thy Cancer. The answer shall come to those who shall be present to hear it. Be present to hear it when it comes.

2. Thou shalt love thy chemotherapy, thy radiation, and thy other treatments even as thyself, for they are thy friends and champions. Although they may exact a toll for their endeavors, they are oft most generous in the favors they bestow.

3. Thou shalt participate fully in thy recovery. Thou shalt learn all the details of thy ailment, its diagnosis, its prognosis, its treatments, conventional and alternative. Thou shalt discuss them openly and candidly with thy oncologist and shalt question all thou do not comprehend. Then, thou shalt cooperate intelligently, and knowledgeably with thy doctor.

4. Thou shalt regard thy ailment as a temporary detour in thy life and shalt plan thy future as though this detour had not occurred. Thou shalt never, at no time, nohow, regard thy temporary ailment as permanent. Thou shalt set long-term goals for thyself. For thou will verily recover and your believing so will contribute mightily to thy recovery.

5. Thou shalt express thy feelings candidly and openly to thy loved ones for they, too, are stricken. Thou shalt comfort and reassure them for they, too, needest comforting and reassurance, even as thou doest.

6. Thou shalt be a comfort to thy fellow-cancerites, providing knowledge, encouragement, understanding and love. You shalt give them hope where there may be none, for only in hope lies their salvation. And by doing so, thou providest comfort for thyself, as well.

7. Thou shalt never relinquish hope, no matter how thou may feelest at that moment, for thou knowest, in the deep recesses of thy heart, that thy discouragement is but fleeting and that a better day awaits thee, perhaps tomorrow, perhaps the day after tomorrow, but certainly it shall come.

8. Thou shalt not regard thy ailment as the sum total of thy life but as merely a part of it. Fill your life with other diversions, be they mundane, daring, altruistic, or merely amusing. To fill your life with your ailment is to surrender to it.

9. Thou shalt maintain, at all times and in all circumstances, thy sense of humor, for laughter lightens thy heart and hastens thy recovery. This is not an easy task, sometimes seemingly impossible, but it is a goal well worth the endeavor.

10. Thou shalt have enduring and unassailable faith, whether thy faith be in a Supreme Being, in Medical Science, in Thy Future, in Thyself, or in Whatever. Steadfastly sustain thy faith for it shall sustain thee.


I think what I like most is that they're framed as commandments, which might seem a little harsh and demanding, stuff you're forced to do (and if you're like me, you hate being told what to do). But I think the opposite is true: we all sin, we all break commandments, and then we try again, because we know it's ultimately the right thing to do.

And with these cancer survival commandments, sometimes we do sin. Some days, really, you just don't feel like being positive. And that's OK. You've earned the right to commit that "sin" and feel sorry for yourself. But then you know tomorrow is a new day, and it's time to get back on track and try to find some way to laugh, or learn, and et positive again.

And if I had to give advice to someone, I'd say #5 was most important. The times I've felt worst were the times I've clammed up and stopped talking because I didn't want anyone to be worried. But sharing helps everyone involved -- and everyone you love is involved.

Monday, October 5, 2009

Hockey Intro

This one is for my brother, the hockey player.

It's the intro video for the University of Alaska-Fairbanks hockey team, the Nanooks; they play it on their scoreboard screen at the start of every home game.

Not only is there nothing cooler than an exploding digital polar bear on a 30 foot screen, but it brought up a memory from long ago.


I was working on Martha's Vineyard the summer after I got my Master's as Program Coordinator for Northeastern University's Insititute for Writing and Teaching. We'd bring in elementary, high school, and college teachers from all over the country to classes on how to teach writing. My job as coordinator was way less impressive than it sounds -- I did things like pick up muffins from The Black Dog Bakery every morning, unclog the occasional toilet, and make sure guest speakers like Mike Wallace had a pitcher of water available on the table when he spoke to our students. (I mistakenly used a coffee pitcher for Wallace's water -- he took one sip of the water and made the slightest face -- always the professional -- but didn't touch the bitter, coffee-flavored water for the rest of the afternoon.)

Anyway, one man who came to take classes at the Institute was a man named Rick, who taught at Alaska-Fairbanks. For the month he was there, we razzed each other about all kinds of things. Periodically, he would challenge me to an ice cream eating contest at Mad Martha's, which had one of those deals where you could order a huge amount of ice cream -- 15 scoops, 8 toppings, bananas, whipped cream, the whole deal -- and if you could eat it all, you'd win a poster or something. Rick and I did finally meet at Mad Martha's near the end of the month, and we ordered the ice cream monstrosity, or whatever it was called. But we didn't have a contest -- we just shared it (he and I, plus Isabel, and Rick's wife and daughter).

As we enjoyed our ice cream, Rick mentioned that there were two openings in the English department at the University of Alaska -- Fairbanks, and that Isabel and I should consider applying. We weren't married yet, but I was up for the adventure. Isabel, however, was a little reluctant about living in Alaska.

"Why are there two openings?" Isabel asked Rick.

"It was a husband and wife," Rick said.

"Couldn't deal with the $8.00 a gallon milk?" I asked Rick.

"No," he said. "Murder-suicide."

Some looooooooong nights in Alaska.

Funny how an exploding polar bear can trigger a memory......

Friday, October 2, 2009

Live Strong

Today is LiveStrong Day, sponsored by the Lance Armstrong Foundation.

As always, the LAF is looking to increase awareness of cancer issues. Wear yopur yellow bracelet, or some other yellow article of clothing.

The LAF is also taking a stand on the health care debate by petitioning Congress on issues very much on the minds of cancer patients: people shouldn't be denied coverage based on pre-existing conditions, and they shouldn't lose coverage if they switch jobs.

Not too late to get involved in the day. Check their website for events near you.