Sunday, February 28, 2010

CSC news roundup 2010-02-28

A Real Sweet Cancer Video

Taken from the Canadian Breast Cancer Foundation website:

Elmwood School has a proud tradition of supporting and participating in the Canadian Breast Cancer Foundation CIBC Run for the Cure.



Saturday, February 27, 2010

A Hairy Moment

Today I shaved my legs for the first time since August 2008. Tho not having to shave was nice for a while, having my hair back is great. This along with my eye brows and lashes coming in ... my face is now starting to look more normal.

Next on my list is nose hair... yupper, to help stop up my perpetually runny nose. And ... having some hair on my head just adds to my healthier new look. Now I don’t stand out so much. So yay for me!

Friday, February 26, 2010

HEALTHY SPIRITS:BEER OF THE MONTH CLUB MARCH 2010...

...is ready for pick-up!

cheers,

dave hauslein
beer manager
415-255-0610

A Good Day

This morning I was at the cancer clinic to hook up with the knitting group. What a great group of ladies. Last week I mentioned that I had many bloggers suggest I try a neti pot for my sinus issues. I never purchased one because I was a bit apprehensive about the whole thing. Well one of the ladies was listening because she bought a NeilMed Sinus Rinse kit for me to try out. Thank you very much. I’ll let you know how it all works out later.

I came home for a quick pit stop and then I was off to the Second Cup coffee group. We chatted for three hours ... wow. We sure covered a lot of ground.

... this was a good and busy day.

Thursday, February 25, 2010

Be happy * it's Adar.

Adar is the Hebrew month that we're in now, and sundown Saturday is the beginning of the holiday of Purim, which is when we're supposed to get gifts, not during that puny little holiday in December. But we live in a Christian society.
Rabbi Susan Schnur has a fine series of articles in Lilith about the holiday and its misogyny and pagan origins. And more.


[Anne Gauldin as Waitress Goddess Diana, 1978; put it in context by reading the Lilith pieces.]

Biopsy results -- good news

I saw Dr. G yesterday and the results of the biopsy of the bump on my shoulder blade were benign -- it's nothing. And so, evidently, are the bumps on my head. Nothing.

For nothing, they sure feel like something, but I am not eager to have my head shaved in order to biopsy them. If Dr. Goldberg isn't worried about it, I'm not worried about it.

My CA 27-29 tumor marker came down again last week for the second month in a row. It had been climbing steadily for many months prior. Dr. G was able to show me a graph of my tumor markers and there was a clear spike beginning in June 2008 -- when I began the Megace. So Megace was not my friend and I am glad to have switched treatments.

The recent reduction in tumor markers is due to stopping the Megace. I am going to stay on the toremifene for the time being to give it a chance to work, but it remains to be seen what effect it will have on my cancer.

In the meanwhile, I feel good! What more can one ask for?

Cancer Around The World

Here is a 7 and a half minute video about cancer in different parts of the world.



Political discussion

WCK: Who's the mayor of Kansas City? (Note: I'm pretty sure she only knows about mayors because of the Mayor of the Munchkin City.)

ME: His name is Mark Funkhouser.

(Pause)

WCK: Is he funky?

Wednesday, February 24, 2010

More New Hair

The other day I was cleaning my glasses in the bathroom and decided to take a closer look at my face. In the past I’ve avoided doing this because my face always looked so abused... puffed up with dark lines. I definitely look older when on Taxotere. Anyways, when I looked closely ... I noticed that I sprouted new eye lashes. Woohoo! There is only about ten of them on both upper lids but hey, I’m happy. Now I need to buy some mascara. I’m hoping Revlon will offer me their Remarkable Definition and Massive Volume the commercials always promise. Oh well, I can only dream.

As far as my eyebrows go ... some hairs have always stuck around but now I’m noticing a few new ones there too... of course, not just where they should be. I may have to pluck some out once they get fuller and longer. I seem to be sprouting all over the place. Soon I’ll need to start shaving my legs. 

As far as the hair on my head goes, it’s coming in pretty good but a bit wiry ... not the soft and curly stuff. Well I won’t complain ... too much.

With hair sprouting everywhere ... it really does feel like Spring around here.

Tuesday, February 23, 2010

Gimme That Ol' Gift O' Cancer

And Annie and I fell in love all over again. We refer to the gift of cancer, because despite the hell she went through, it delivered us heaven on earth. It gave us gratitude for every blessed second we have together
--Mark McKinnon, media strategist and name-dropper, on his wife's cancer in the Daily Beast

Ruth Pennebaker
alerted me to this saccharine-filled bromide-fest.

Mark McKinnon, who should be asking for public forgiveness for helping George W. Bush and John McCain meet strategic challenges, is instead lauding the wonderful attitude of his perfect wife. She was diagnosed with an unnamed cancer that kills 85 percent of those who get it. She decided she was going to be in the 15 percent. And she was. And despite radical radiation, aggressive chemo, and surgery to take out basically all non-essential organs, Annie beat the terrible odds. She turned out to be Lance Armstrong in a skirt.

Apparently there are some people out there who are unaware of mortality. They need a jolt of lightning, in the form of cancer or other life-threatening disease (any will do), to wake them up to the notion that Life is Limited. We will die. Carpe diem. Or as the liquor store down the street and around the corner puts it: Carpe noctem.

McKinnon writes about always having been lucky. Apparently that luck came without a drop of empathy. His brother is paralyzed from an accident, his sister has endured 30 operations for severe arthritis, and he calls himself lucky. Oh well, he can move without pain. A more aware person might write about the sadness of being the only well sibling (a term used recently and well by Jessica Handler) and having to watch the suffering of people he loves.

Hey Mark, please talk to my young friend Jesse. Ask him about cancer being a gift. He could drop names, too: he hangs out with famous people like Oscar Mayer and Jack Brickhouse and Frances Willard.
















And you can guess the punchline: in the cemetery.

[photo: entrance to Rosehill Cemetery, Chicago]

Gimme that ol' gift o' cancer
Gimme that ol' gift o' cancer
Gimme that ol' gift o' cancer
It's good enough for me.
It was good for Gracie Paley
It was good for Molly Ivins
It was good for Mimi Engelberg
It's good enough for me.

Great news

M-spike = 2.5

It actually went down.

It's the magic NKOTB cloth. It has healing powers.

Targeting A20 Decreases Glioma SC Survival and Tumor Growth

Targeting A20 Decreases Glioma Stem Cell Survival and Tumor Growth by Anita B Hjelmeland and 10 co-authors, including Jeremy N Rich, PLoS Biol 2010(Feb 23); 8(2): e1000319 [FriendFeed entry][Connotea bookmark].

For a news release about this publication, see: Researchers identify a potential therapeutic target for brain cancer, EurekAlert, February 22, 2010. First paragraph:
Researchers at the Cleveland Clinic report the identification of a protein that is highly expressed in a subgroup of glioblastoma brain tumor cells and show that depletion of this protein increases the survival of mice with these tumors. This work will be published in the online open-access journal PLoS Biology.

The Living Well Group

First thing this morning, I checked my emails and it’s a good thing I did because my buddy C from my Second Cup coffee group was wondering if I had registered for the ‘Living Well’ group at the Cancer Center. It’s going on this morning at 10:30... I thought it was next week and quickly got on the phone and registered.

This new group is for cancer patients interested in learning more about living well. It’s based on something called positive psychology ... trying to make normal life more fulfilling.

I look forward to this group as I do with any of the groups I join ... I can’t say enough about how much I value them. I’m always learning new coping skills. And of course there are always the people ... some familiar faces and new ones too. I enjoy the social interaction and listening to the stories of what other cancer folk are going thru.

Each week we will have some take home exercises to practice what we’ve learned. I’ll keep you posted.

WCK sums up my life

This morning, WCK and I were playing pretend: She was the grown-up and I was the kid, and she was putting me to bed.

"What are you going to do after I go to sleep?" I asked.

"Oh," she said, "go downstairs, load the dishwasher, write a bunch of big words, and try to stop Daddy from acting silly."

Yep. That sounds about right.

Sunshine!

I will be gone for the next week, we are leaving early Friday morning...away from winter, out of the country, in the Eastern Carribean. I will be enjoying sunshine and green and warm breezes with my husband of 22 years. It will be a kind of second honeymoon for us...the last time we took a trip with only the two of us was our honey-moon! There are some good things about being empty-nesters!

I am not a fan of winter, and by February I've had enough of snow and cold and gloom. In my perspective, the only good thing about winter is that it so makes me appreciate spring. Maybe I'd take for granted sunshine and warmth and growing things if I lived in a more temperate climate?

I was in San Diego for awhile one April. They have an average year-round temperature of 70 degrees. While I was there, the natives complained loudly about a day that was 50 degrees (SO cold!) and another day of 80 degrees (SO hot!). I live where the yearly temperature varies from below zero to 90 degrees, so couldn't relate. I felt they were spoiled!

So for the next week I'll be without internet access and cell phones. And though I love the ability the internet has allowed me to connect with other rare cancer patients, I will be glad to be away from electronic communication. I've read, and I agree with, the statement that while we are more connected (electronically) than ever before, we are also lonelier than ever before. Since the electronic age, I've come to truly value real time communication, complete with body language and vocal intonation. I tried Facebook, but it wasn't for me. I in the end deactivated my account. I guess it's just not my way of relating to people.

So I will be enjoying "real" time with my husband over the next week, and am sure I will have lots of emails to answer when I get back...and I will!

BTW, I've learned some of my email replies go to folk's "junk" mail folder...so be sure to check your "junk" mail...I also have several legit emails that end up in my junk mail, so always check it. Not sure how that works in this electronic age....

Feedback from commercial medical suppliers

I occasionally receive feedback to a post from someone representing a commercial medical supplier. In a recent post on lymphedema, someone used this forum as an opportunity to plug his company's lymphedema garments. I appreciate that "Jason Longmier" wanted to offer me relief from my lymphedema troubles, but I removed his post. The last thing I want is for another person living with cancer to think that I might endorse a particular product when I don't use it.

When I tell you that I use something, it's because because someone on my health care team has recommended it to me.

So if you are employee of a medical provider, no matter how well-intentioned, please don't troll the web looking to take advantage of cancer patients' blogs and thinking you can advertise your product or company for free. Or at least, don't do it on my blog.

sunday was a good day (by lucy, as told to laurie)


On Sunday, two of my humans and I went to a very special birthday party.


There was cake.


The birthday girl turned 17.


She looked very pretty.


A good time was had by young and old (I thought S. was a little too cuddly with that puppy).


It was fun to be at a party.



It was nice to have a nap, too.









Monday, February 22, 2010

The Lazy Life

Is taking the easiest, least stressful route being "lazy"?

I think so, but I've finally made peace with "lazy." In a good way.

Read more about my lazy luncheon at Open Mouth, Insert Fork.

The Cloth is here.

Very, very rarely do I ever remind people that I have cancer so I can get special treatment. The closest I come to doing this is when I end particularly humiliating posts with the words, "You can't make fun of me. I have cancer." This time, I want to remind everyone of this fact right up front, and I want to remind people of this very frequently, because the temptation to make fun of me for what I'm about to share is going to be too much for some of you to bear. Then you'll feel all guilty for making fun of someone who has cancer, and, you know, I just don't want to put you through that. I'm only thinking of you.

So, The New Kids on the Block just came out with a new DVD filled with concert footage from the reunion tour as well as in-depth interviews.

(I'll pause here so you can fight the urge to make fun of me. It's about to get worse, and you'll need your strength.)

If you pre-ordered the DVD through the NKOTB web site (which, of course, I did, because I have cancer and nobody can make fun of me), you also got a free gift:



What is this? What is that funny little rectangle in the middle of the attractive cardboard display?

It's a tiny piece of cloth from one of their outfits.

That's right. I was actually a little disappointed that the cloth came in the little cardboard display, because there's no way to get it out without destroying the whole thing, and I kind of want to touch it. OK, I really want to touch it. (I have cancer, people! I have cancer!)

The DVD and The Cloth arrived in the mail on Thursday, which was perfect timing. Jay and WCK went to a Daddy-Daughter Dance on Friday, which meant I was home alone and free to watch my DVD and gaze lovingly at The Cloth without anyone (Jay, mainstream society) making fun of me.

About halfway through the DVD, I heard vague, ax-murderer-like thumping sounds outside, as I always do every time I'm home alone. My first thought was not that the ax murderer was going to kill me, but that

a) the ax murderer was going to burst in and catch me watching a New Kids on the Block DVD and make fun of me before killing me and

b) said killing would mean I'd never get to see the rest of the DVD, not to mention the Bonus Disc, which features a Q&A session from the official New Kids on the Block Cruise. ("If you could have any superpower, what would it be?" Jordan said he would be Elastic Man.)

But nobody broke in, and I finished the DVD and all of the bonus features, and the whole thing was glorious. Glorious, I say!

You can't make fun of me. I have cancer.

I lost another friend.....

I lost yet another friend to appendix cancer today. My closest appendix cancer friend.

She found my website just after she was diagnosed, and we have been in touch often in the years since. She was my age, and also a nurse...so we shared a lot right away. She, at age 50, defied the odds of being female and being older and was accepted into medical school. She'd always wanted to be a doctor. She was doing well in medical school...until she had appendicitis, until she discovered she had appendiceal cancer. She had a hemicolectomy and then returned to med school, she was going to be one of the survivors. Then her cancer recurred. She had a second surgery, and as a result of that surgery the nerve to her right leg was damaged. She became disabled. But she still returned to med school. To her dream.

Her cancer then recurred again, this time inoperable. She decided to forgo chemotherapy and to instead use alternative therapies. They didn't work for her. We communicated once, sometimes twice a day as her life deteriorated. She was dying and I knew that. I hated that she wouldn't be my friend forever in this life. I hated that she would never realize her dream of becoming an MD. I hated that cancer was stealing another friend from me.

She suffered unending pain and nausea and disability in the end. Her quality of life deteriorated to the point that she wished the relief of death, even if it separated her from those she loved. She finally admitted herself to the hospital for palliative care. She died just days later. While I was so sad to lose her, I'm relieved that she is finally cancer-free.

But in the end, she still advocated my dream of further education. She said initially I supported her when she was in school, and she wasn't able to finish, but maybe there was a justice in her encouraging me to pursue my dream of further education...at least one of us might graduate! We were always each others cheerleaders. We shared a lot...our dealing with a cancer diagnosis, our loves, our lives, our feelings.

Why couldn't she have been a survivor like me? Why couldn't she have realized her dream of becoming an MD? She only wanted to help people.

I have no answers.

I got to say goodbye to her before she passed. I told her how much I would miss her friendship. I asked her to try to contact me from the great beyond when she gets there...she said she's always been a bird lover (me too) so will try to contact me as a pink finch. I have a bird feeder and get a few finches, but NONE of them are pink. I will so be looking for a pink finch. If I see a pink finch, I'll know my good friend is just a parallel universe away from me.

I will be sure to keep my bird feeders filled this year. Especially with finch food.

Oncologist Appointment

Just got back from seeing the Onc and everything seems to be in good order. I keep telling her how happy I am with Xeloda as compared to the Taxotere I was on. She really is happy with how well I’m doing with the Xeloda. But she still goes through the list of obvious side effects ... mouth sores, diarrhea and cracks in my hands and feet. I said I am not experiencing any mouth sores, no diarrhea and also ...no skin cracks because I am ever so careful with moisturizing. She asked me take my socks off to make sure and she actually pointed out one spot at the base of my big toe that looked very dry. I’m glad she had a look.

Anyways, my Onc reminded me that she will be going on maternity leave starting next week. She gave me the name of the Dr that will be taking over and booked my next app and tests.

I stopped by the pharmacy to pick up my next round of Xeloda. Not much more to report than that.

More lymphedema news

My left hand seems to be responding well to the therapist's idea of wrapping the hand and wrist only at night. The edema has reduced and the tissue feels softer at the beginning of the day. However, once I remove my glove at the end of the day, the tissue is still firm, but a few minutes of massage helps.

My big concern is my inability to do anything after I bandage my hand (I'm left-handed). I have been pretty home bound at night (don't want to drive bandaged) and of course can't type, hold a pen, cook, hold or grip anything, etc. either. I have to take lorazepam to sleep and know that I will have rebound insomnia from that once I am done bandaging.

But the idea seems to be working!

Breast cancer and aspirin

You may have read or heard the news last week about how women with early stage breast cancer who were already taking aspirin regularly for another reason may have had some benefit from the aspirin on their cancer.

When my port-a-cath was originally placed, I was told to only take tylenol, not aspirin or ibuprofen, because the additional blood thinning properties of those drugs would interfere with the effectiveness of the warfarin (blood thinner) I had to take to prevent an infection in my port.

So no weekly aspirins for me. But it's a fascinating story nonetheless.

Guest Post # 2: Mom's reponse to son's scholarship essay

I think I am so much more emotionally sensitive than my son has ever been. The essay he wrote for this scholarship and for a college application struck me as very thoughtful in its almost winding perusal of our ancestors and their experiences as compared to what we face today in our own lives.

My son is my only child, and I still do not know if he is truly worried about my prognosis. He holds so much in and for the most part, we are opposites many ways. I do not hold in my emotions on a daily basis, but Will seems to do this, funny thing is though, he may not even FEEL the level of emotionality that I do. This essay he wrote over a year after my diagnosis; told me for the first time, that he was concerned about perhaps losing me to cancer sometime soon. I have not told him the gory details of how aggressive the signet ring call cancer is known to be, but is it really aggressive for every patient? I don t think anyone knows. I love him so much, I will assume it is NOT aggressive in my case.

For now, I will be satisfied if my CT scan from 2 days ago tells us nothing is growing large enough to be seen, and to get him on his way to college- on his adventure to further his survivor genes, much as our ancestors did. I hope and pray with all my being to see him graduate, and have more of our descendants this will be what keeps me going and surviving too.

Lisa Laws, age 51, Apex NC

Sunday, February 21, 2010

Progression of primary tumours and metastases

Parallel progression of tumour and metastases by Serge Koscielny and Maurice Tubiana, Nat Rev Cancer 2010(Feb); 10(2): 156 [PubMed citation]. Commentary on an opinion article: Parallel progression of primary tumours and metastases by Christoph Klein, Nat Rev Cancer 2009(Apr); 9(4): 302-12 [PubMed citation]. An excerpt from the full text of the commentary:
[Data are presented that] are consistent with the linear progression model when it is assumed that there are two types of cells in tumours: those that can initiate metastases (metastasis-forming cells (MFCs)), which probably derive from tumour stem cells[ref 7] and those that probably cannot initiate metastasis because their proliferative ability is limited[refs 7,8,9].
Response to the commentary: Tumour cell dissemination and growth of metastasis by Christoph A Klein, Nat Rev Cancer 2010(Feb); 10(2): 156. Excerpt from the full text of the response:
Finally, the authors declare that the parallel progression model is incompatible with the cancer stem cell hypothesis. As defined above, parallel progression does not address this issue.
The 'linear progression model' described by Christoph Klein "places major evolutionary events in the primary tumour and late dissemination of fully malignant cells that subsequently grow to manifest metastases". In the 'parallel progression model', there is "early dissemination of tumour cells from the primary tumour and ectopic selective adaptation (which is associated with the emergence of genomes fully able to form metastases)" (see Christoph Klein's response).

Major Shopping

It’s been about a year and half since we went to our big mall ... West Edmonton Mall. It is so big ... we generally avoid it because it is just too much territory to cover. Yesterday tho, we felt like a challenge. We knew it was going to be busy because the traffic was just crazy on the way there and then finding a parking spot was a whole deal all in itself... everyone was circling around like vultures looking for a parking spot. Our strategy was to watch for someone leaving and then follow them to their car ... it worked. 

We finally got in and boy was it busy, wall to wall people. Our first stop was to catch the seal performance at the water park. Then we walked around for about an hour. It wasn`t long before the thought of coffee crossed my mind and I scoped out a Second Cup. It has a stand-up bar with bar chairs; a nice break ... and then off we went. It didn`t take long before I noticed the bottoms of my feet felt like they were burning up... a side effect of Xeloda. I’m not sure what brought it on... all the walking that I did it or the fact that I was a bit over dressed ... way too warm.

I pushed it a little bit more and we ended up at Sears where D scooped up a couple of tops. Wow what a winter sale ... 60% off and a further 10% scratch card at the till. At this point my feet were really smoking hot so we stopped for a burger at the food court and then headed home.

Saturday, February 20, 2010

Healthy Spirits: Alesmith Old Numbskull


...is now available.

Come and get it!

cheers,

dave hauslein
beer manager
415-255-0610

Looking Back One Year

I went back in my blog ... one year to see how I was feeling for 1 week. I remember feeling pretty down in the dumps as the Taxotere side effects were really rough. And the steroids just added to it. As I read my posts ... my first reaction was ... hey, I think I wrote pretty clearly. That surprises me because my brain was under such a chemo fog ... I wasn’t sure what I would find when I re-read some of my stuff. 

As I read the posts, I remember feeling quite ill, moody and hopeless. I remember having terrible sleeps filled with nightmares and the days were filled with aches and pain and miserable feelings. The focus back then was to get through the day and then through the night ... and not much more. I remember feeling this was a one way experience ... I’d get worse and worse and then die. 

Never did I think I would go onto a new chemotherapy that would give me back some quality of life. I feel so much better now. 

My goal today in writing about my experience last year is to show that there is always hope.... things do change for the better.

Friday, February 19, 2010

this happened today





Healthy Spirits: New Arrivals from VICTORY!!!


I am happy to announce the arrival of three more awesome beers from Victory, a great Pennsylvania brewery that only recently broke into Northern California.
1. Wild Devil-the Hop Devil IPA with brettanomyces yeast. Delish.
2. Baltic Thunder-A dark, strong Baltic Porter.
3. Hop Wallop-a really tasty double IPA with tons of big, piney hop character.
cheers,
dave hauslein
beer manager
415-255-0610

The Knitting Group

I’m just back from the knitting group. The ladies here are knitting up a storm and creating some great looking scarves and shawls. There are some pretty cool patterns out there too, but I’m sticking with knitting a simple scarf.

It’s slow going for me because knitting is tough on my finger tips... and I don’t want them to crack either. So instead of going full bore, I chat a lot. I spoke with one lady who would like to connect with others with head and neck cancer. The surgery that these folks often have is out in the open for all to see. So I’m going to email her some of the oral cancer blogs I follow and see what groups are available here in Edmonton. I think it is so important to connect and help others.

International Man of Mystery

I was in the waiting room at the cancer center on Wednesday, and a fellow patient, a suit-wearing man, was talking very loudly into his cell phone. In the first conversation, he was upset with someone at his workplace for sending out a letter that was going to affect someone named Rex.

"We're going to lose Rex now," he said, "because I know Rex, and Rex is a man of honor, and now Rex is going to believe that we're not men of honor. Fortunately, (some other guy) hasn't heard about this yet, because he's in Jakarta."

He hung up and immediately called someone else: "John? This is Tom. Have you been able to reach the embassy?"

Wow. Men of honor? Jakarta? Embassy? Rex??!? I am dying to know what happened.

Thursday, February 18, 2010

A double-duty medical day

Today I had two medical appointments scheduled back-to-back.

The first was with the lymphedema therapist, who agreed that there was something we could try to reduce the swelling in my hand and wrist. I've had increased edema there since Labor Day and was willing to try again with another therapist. For months my left hand has been so swollen with fluid that I can barely close it, much less make a fist. Today's evaluation appointment led to one recommendation. I am going to try bandaging my hand and wrist only at night. If I see softening in the tissue (the step before reduction in edema volume), then we will know it works. If nothing happens, all I've wasted is a few nights of good sleep. And if it seems to increase the edema, I will stop. I have three more appointments scheduled with this therapist.

After a ten minute break between appointments (at least the two places were close enough to walk to) I saw Dr. F for the first post-op checkup. She was adorable, calling her work on my tummy so perfect that I could wear a bikini on the French Riviera and no one would know I'd had surgery. (I should have asked her to pay for the trip or at least the bikini.)

Dr. F also did a pelvic exam. I had mentioned that I have some pain after urinating, and she thought it might be due to stitches rubbing against my bladder. The stitches will dissolve. I see Dr. F again in mid-March, six weeks after the original surgery date.

I drove home, felt so ooghy from the exam that I laid down on the sofa, took some vicodin and then some lorazepam to keep me from feeling like I was crawling out of my skin, slept a bit and now am feeling better. (Of course, I also got in my jammies at 6 PM.)

What Olympic tape-delay controversy? NBC still doesn't get it

I realize this is off-topic, but I have been so frustrated with NBC's tape-delayed west coast Olympics coverage. Vancouver BC is only a couple of hours' drive from Seattle, practically in our backyard and certainly in the same Pacific time zone. I even wanted to attend some events (but the prices were ridiculously high).

We have been following the Olympics on NBC, which tapes and delays their live coverage to the west coast. So when my mom watches the Olympics live at 8 PM in New Jersey, she can't call me to say "wasn't that wonderful?" because it's only 5 PM in Seattle and NBC won't air the coverage here for another three hours.

Yesterday's Seattle Times carried a great article by a local reporter covering the Olympics. Ron Judd has received numerous complaints from readers expressing frustration at no live coverage of the Olympics in Seattle. On their behalf, he contacted an NBC vice president of communications, Christopher McCloskey, who clearly doesn't get the problem.

Even King5, the local NBC affiliate, has had so many complaints from viewers on this subject that they said on their website, "For those concerned about the 3-hour tape delay on the West Coast, the decision to broadcast the Olympics live or on tape delay is made by NBC Sports, not KING TV."

When was the last time you heard a local affiliate of a national network disclaim the relationship?

So if you are one of the "tiny, vocal minority" that NBC thinks are the only people frustrated about watching delayed Olympics coverage happening right up the road from Seattle, feel free to contact NBC via their Olympics website for viewer response. Or send NBC an email at feedback@nbcuni.com.

You can read Judd's full Seattle Times article here.

eye witnessed


Yesterday, the Globe and Mail ran this article about Joe Webber, a man from Aylmer, Ontario, who was falsely accused of forcible confinement and robbery. He was convicted and served nineteen months in jail, based solely on eye witness testimony Although, the perpetrators of the crime were masked, one of the victims of the home invasion identified Webber, claiming to recognize his "bright blue eyes."

Webber's eyes are actually gray. 

Webber was sentenced to 7 1/2 years in jail but was later cleared when two other men confessed to the crime.

Duane Hicks, who identified Webber, remains adamant that it was Webber and his blue (really gray) eyes that he saw behind the mask.

It's a fascinating and tragic story but it's not the first time, in recent weeks, that I've had cause to think about the unreliability of eye witnesses.

A couple of weeks ago, I was walking the dogs home from the park when I saw a woman and her Bernese Mountain Dog coming towards me. I knew them both from the park and called out a greeting as she grew closer.

J-Dog, my older, bigger dog (55 lbs, the Bernese was much bigger than he was) has been getting a little crochety in his old age. He's taken a dislike to younger male dogs, especially when he's on leash. There's never been any serious fighting but, as a precautionary measure, I've been crossing the street or making J-Dog sit when other dogs are approaching on leash. This time, though, since the dogs had met many times, I didn't think to do it.

When the Bernese got close, Jasper lunged at him and growled. The other dog reacted the same way, his owner went to pull him back and slipped on some ice. She fell into a snow bank and the force of her fall brought her giant dog down on top of her. His paw hit her in the face and cut her lip.

We were both uspet (the humans were. The dogs, having recovered from their tussle, were just standing calmly beside us). I felt terrible not to have foreseen the interaction. We were both apologizing to each other, when two women who had been walking behind us felt the need to jump in, one yelling at me and the other fussing the other dog owner.

They kept asking her over and over again if she was OK. She kept saying "yes!" We both tried explaining that it was fine, that we knew each other and so did the dogs ("That doesn't matter!" one woman exclaimed) but they were zealous in their condemnation of me (and my dog) and vociferous in expressing their anger and outrage.

I realized later, based on a few things they said, that both women believed that they had seen Jasper attack the other dog owner and the Bernese leaping in to protect her. 

And I'm sure they would have made sworn statements to that effect.

The dogs and I ran into the Bernese and his human (off-leash) in the dog park and the dogs played together happily. I apologized again for not anticipating J-Dog's bad behaviouor and she once again stated that she feels both dogs (and both owners) were at fault. She also commented on how the intervention of those "witnesses" had just made things so much worse.

I've learned my lesson. I'm now completely consistent in making J-Dog sit when another dog approaches, even when I know it's a dog he likes. And it goes without saying that the only comparison to what happened to J-Dog and Joe Webber was the absolute conviction on the part of witnesses that they saw something that did not happen.



I want to be de-cancered.

Kairol Rosenthal will be at Modern Times in the Mission next Wednesday to read from her book, Everything Changes. I will be there too, so if you are in the area, let's meet up and exchange horror stories...

My mom gifted me Everything Changes shortly after it came out. I had just finished treatment. I sifted through some of the pages thinking, "This would have been great a year ago". I wanted nothing to do with cancer, I wanted it to be solely in the past. So I put the book down and went on with my self proclaimed un-cancerous life.

But, Kariol's book is a resource for those who've already ridden the cancer roller coaster and lived to tell about it. One thing that is becoming more and more apparent is that I'll never rid myself of that death-defying thrill ride. It wasn't the cancer itself that was traumatic, it was the treatment. And, the treatment rarely cures us. It affords us more time, at the very least, and for that I am grateful.

I have been attempting to manage my chronic pain via Kaiser's services. It's slow going, with the majority of treatment lines requiring you to take weekly classes that have little to do with anything before you start the program. Once I'm past all of the red tape, I hope to learn to manage all of these nasty after-effects, both physical and psychological.

One quote in Everything Changes that perfectly encapsulated my sentiments:

"I felt like I had to fight for my right to be pain free. My Nurses made me feel like a drug addict after my bone marrow biopsy. 'Nobody else needs pain killers,' they said, all condescending. Sorry, but I'm the boss of my own body." -Dana Merk, 24

WORD!

Special Report on Cancer

From the Stand Up to Cancer website ...

On January 28, CBS Evening News Anchor Katie Couric - who is also one of SU2C's co-founders - reported on cancer research and treatment in a segment entitled Where America Stands: Cancer.

Here is the 7 minute video.


Wednesday, February 17, 2010

Guest Post: Scholarship Essay from the Son of a Survivor

By William Laws

When my family tells me about my predecessors and how they first arrived in America, it makes me wonder how they made it through the circumstances they chose. Today’s problems of pandemics, wars, and financial strife seem very manageable when one thinks of the problems that the first settlers of “The New World” faced.

From what I know about my ancestors, I am a mix of French and German settlers to New England on my father’s side. I think I can imagine how cold their lives must have been. Sickness was a common occurrence, and effective medicine was hard to come by. Yet these people withstood what everyone can assume to be very bad times, and the majority of this side of my family has not moved more than two hundred miles from where they entered the United States. I wonder if it was because they struggled, and had no choice but to stay.

On the southern end of the thirteen colonies, my mother’s English, Scottish, and Irish forebears are known to have come into Norfolk, Virginia and Wilmington, North Carolina. In fact, my mother tells me that the William Laws name was first seen in the ships’ logs of coastal Virginia during the 1600’s. While we do not have written records of the direct connection, we know the Laws name traveled to North Carolina very early on. There is a major interstate winding through Virginia numbered 81- that used to be called “The Great Road” over ten generations ago. My maternal German Protestant ancestors traveled in a wagon on that rutted road to Washington County, Virginia in 1789. Their descendants are still there today. Their strength to withstand disease, harsh winters, and other miseries in the rustic Blue Ridge Mountains of the 1790’s proves to me that I come from a long line of survivors.

All of my predecessors’ struggles were to better their own circumstances and their descendants’. I have benefited from their struggles. My life is not perfect, but for the most part, I am a very fortunate person. Although my parents haven’t lived together since I was an infant, I don’t feel disadvantaged because of it. Both of my parents have stable jobs and homes, and both of them love me very much. But last February, my mother received some shocking news that would change our lives forever.

I turned around and shut the front door. It was a rainy Wednesday night, and my father had just dropped me off at my mom’s house after my weekly scheduled visitation with him. When I saw my mother and stepfather sitting down in the living room, I could immediately sense that something was wrong. My mom’s mascara was a little smeared; it was obvious that she had cried a little while ago, but she had calmed down by the time I arrived. Ed, my stepdad, was sitting on the couch in apparent shock. It looked like they had been motionless for a while, just waiting for me to come through the door.

“Honey, sit down,” said Mom weakly. At this point, I started to scan my memory for things I had done wrong lately. I couldn’t think of anything, but that didn’t comfort me. “I have some bad news,” my mom continued after I sat down. “When I went to the doctor today…”

“Oh yeah, how’d that go?” I interjected nervously.

“Well, it’s hard to say,” stammered Mom. “But the doctor thinks that I have cancer.”

I was silent for a while after that; I realized why Ed hadn’t said anything since I had come home.

I finally mustered, “Where, what kind?”

“They haven’t found the main cancer site yet,” she responded. “But from the tests, it looks like I have stage IV cancer. But we’ve decided about some treatments, so there’s a good chance…” she trailed off, as if not wanting to say, “that I’ll live.”

I didn’t know what to say; I simply nodded, gave her a hug, and trudged upstairs to my room.

Thoughts were swirling through my head. How could my mother have cancer? She wasn’t even 50 years old yet. Even though cancer runs in my mom’s side of the family, we were all shocked when we found out it had hit my mother. She was the most health-conscious person in our family; she doesn’t smoke, and only drinks some wine or champagne once in a while. She was always the one telling me and my stepbrother to “eat our leafy greens”, since they have vitamins in them that prevent diseases. But even though my mom practiced a fit lifestyle, she contracted cancer. And it was probably just because both of her parents smoked.

That taught me a lot about fairness in life; someone can have a horrible circumstance occur in their life even if they do everything within their power to avoid it. One does not always control their own destiny; some things are just out of your own hands.

The next 15 months were a real struggle for our whole family. My mom, who was in the middle of graduate school, suddenly had to start chemotherapy. The effects of chemotherapy were draining. Many days she barely got out of bed, unable to gather enough energy to go downstairs. But she still managed to continue her work for graduate school online, something that amazes me to this day.

I gained a lot of respect for my mom while she was fighting cancer, and realized how much different life would be without her. I wouldn’t be able to live without her; she is such a big part of my life and I wouldn’t have accomplished a lot of the things I have done without her encouragement.

The ordeal also brought my stepdad, my stepbrother, and I closer together. Since Mom didn’t have the energy to help around the house most of the time, we had to increase our workload. We worked together to keep our home presentable, which can be hard for a few guys to do.

Thankfully, my mom has had several scans that are free of cancer since this spring, and is back working full-time. She went to Washington D.C. this past May to receive her Masters degree in Clinical Research Administration from George Washington University.

My mom’s fight against cancer taught me to be thankful for the people around me, especially my family. There is nothing more important to me than the well-being of my family. My ancestors probably felt the same way- but in most cases all they could do was hope for the best, and likely lose a family member. In current times, society enjoys more advantages that many people do not appreciate; but our ordeal has taught me to appreciate modern medicine. Even though we did not realize it that February night, our battle against cancer would end up bringing our family closer together instead of tearing it apart.

olympic figure skating ate my brain


I've a post I want to write about the unreliability of eye-witnesses, inspired by this article in the Globe and Mail and something that happened a couple of weeks ago.

I am, however, just too tired.

I've watched four nights in a row of Olympic figure skating and I am bleary-eyed. I love the drama, the spectacle, the artistry and the strength of the skaters along with the feeling that anything could happen at any moment. I also love the personalities and the costumes. It's too much fun.

I have, however, found myself thinking more than once that I would be able to take it all much more seriously if I hadn't seen Blades of Glory.

Shout Out to - Laughing For Cancer

Alright Edmonton ... clear your schedule for Sunday, February 28 from 5:00 pm onward for the Laughing for Cancer live auction and comedy show. Graham Neil from CTV will be hosting the event with comedians from Edmonton and all across Canada. 

About Laughing for Cancer.... Audrew Grose, a local comedian started this benefit after losing his father-in-law in 2002. Laughing with Cancer is $175,000 short of their goal of raising one million dollars.

D and I went to the very first Laughing for Cancer event and laughed our faces off. It was so funny having local comics poke fun of all the thing going on here. We will give our support this year once again.


"Take two (or so) and call me in the morning (or next week or next month or next year)."


A large study that was just published shows that women with breast cancer who take aspirin are more likely to live longer and to not have a cancer recurrence than women who don't take aspirin.

Doctors at three Boston-area hospitals observed 4,164 female registered
nurses in the Nurses’ Health Study who were diagnosed with stages I, II, or III breast cancer between 1976 and 2002. They were observed until June 2006, or death, whichever came first.

The main outcome was breast cancer mortality risk according to number of days per week of aspirin use (0, 1, 2 to 5, or 6 to 7 days) first assessed at least 12 months after diagnosis and updated..There were 341 breast cancer deaths. Aspirin use was associated with a decreased risk of breast cancer death.

Full report here.

The study says of itself that it's unprecedented: Of several large prospective studies of the association of aspirin use with breast cancer incidence, only one found a protective association, whereas four others did not. The 10-year Women’s Health Study Trial found no effect of low-dose aspirin intake (100 mg every
other day) on breast cancer incidence among almost 40,000 women. However, meta-analyses of either NSAID [non-steroidal anti-inflammatory agents/analgesics such as aspirin, ibuprofen, and naproxen] or aspirin have found a 9% to 30% reduced risk of breast cancer incidence. Despite inconclusive evidence linking aspirin and breast cancer incidence, aspirin may improve survival through various mechanisms.


To our knowledge, this is the first study reporting a survival
advantage among women with breast cancer who take aspirin. Abundant
scientific evidence supports why aspirin may confer this advantage.
More than 2 million US women are living after a breast cancer
diagnosis6 Survival among women with breast cancer is variable, and
risks of dying of the disease are elevated even 10 or 15 years after
diagnosis.


How much aspirin is helpful? I kept reading reports about this and couldn't find the number of milligrams. I'm especially interested because I take 162 mg. for polycythemia vera. What a nice surprise it would be if something I take for one disease would help me survive another. Alas, the researchers admit: We
lack details on aspirin dose. If there is a dose response, the effect size in
the current study may be diminished because frequent aspirin users
may be more likely to be low-dose users attempting to prevent heart
disease. Confounding is always a limitation of observational studies.
We addressed this by adjusting for all relevant covariates and through
marginal structural models.


Another caveat: Our results may be generalizable only to longer term breast
cancer survivors (ie, only women who have lived long enough after
diagnosis to report aspirin use after diagnosis, which is approximately
4 years). Fortunately, almost 90% of women diagnosed with breast
cancer live at least 5 years. Thus, our findings have considerable
clinical importance.


"Take-home message," as they say in business: It couldn't hoit. Aspirin has relatively benign adverse effects compared with cancer chemotherapeutic drugs and may also prevent colon cancer, cardiovascular disease, and stroke.

One skeptic has already pointed out that this is an observational study that does not prove cause and effect.

Jimmy John

You might remember that WCK and I tried to adopt a pet goldfish two years ago. I was turned away by the fish lady at PetSmart, who expected me to purchase a $50 aquarium and then endure a 5-day waiting period to adopt a 12-cent fish.

I finally decided we were ready to try again. This time, we went for an easy-to-care-for betta fish, who is perfectly happy in a little tiny tank. Nobody at PetSmart tried to stop me this time. Either I look older and more responsible now, or the PetSmart fish department has become less militant.

We now have a little blue and red betta named Jimmy John, after the sandwich restaurant. He's been with us for maybe 10 days, and now the reality of fish-ownership has set in. Perhaps the militant fish lady at PetSmart two years ago noticed I had a small child and was doing me a huge favor by turning me away. It turns out, when you have a four-year-old and a pet fish, you live in constant terror that the fish is going to die.

Several times a day, I'll see Jimmy John bobbing peacefully in his little tank, and I'll wonder if this is it. I'll rush to the tank, trying to come up with a speech to give to WCK about how all living things die, blah blah blah, picturing the very sad funeral in the bathroom, imagining the walk of shame back to PetSmart to purchase Jimmy John II. Then Jimmy John will flick his fins and come to life, and look at me like, "What?"

Jay thinks Jimmy John is messing with me on purpose.

Tuesday, February 16, 2010

Healthy Spirits: Bruery Mischief, Saison De Lente and more!

The new stuff:

1. Bruery "Mischief"-Hoppy Golden Ale
2. Bruery "Saison De Lente"-Hoppy Saison
3. Three Monts Golden Ale
4. Fruli Strawberry Beer
5. 21st Amendment Monk's Blood
6. Ommegeddon!!!

drink up you wild beasts!!!

dave hauslein
beer manager
415-255-0610

Nursing Sick Dogs Back to Health

Any patient with a dog, knows that our faithful companions immediately sense when we're not feeling well and then do their best to help lick our wounds.

Last night was my turn to help out Betty, our wonder mutt. A little before 5 pm, she started coughing in convulsions. She lost bladder and bowel control. She wandered into the spare bedroom to isolate. Soon, she lost the strength in her legs. She couldn't walk and I couldn't carry her, so my neighbor came to the rescue and gave Betty a lift to the car.

We rushed to the emergency hospital in Eagle Rock and arrived just as they were opening at 6 pm. I was afraid that it was time to say goodbye to my faithful girl. But she pulled through, in spite of literally turning purple, a collapsed lung and a host of other problems set off by an inability to breathe.

We're hoping that Prednisone (the same drug that I take for rising EOS) reduces the swelling in her trachea so that we don't have to do surgery.

When we were at our local vet's office this morning, I stepped on to the giant scale and got a shock. "Is this scale correct?" I asked the vet's assistant in disbelief. Of course, it was. I just couldn't believe that I tipped the scales at 110 - an eight pound weight loss in less than a month. (This in spite of calorie contributions in the form of mac 'n' cheese and soups from two friends.) I've been having a host of ongoing GI problems, which I'm sure explains the plunge in pounds.

I'm scheduled at the City of Hope on Thursday and plan to ask for a referral to a GI specialist.

In the mean time, we sick dogs will just have to stick together and nurse one another back to health.

Bumps on the head

About four weeks ago I noticed two small, round bumps on my head. They didn't itch or hurt but were slightly tender to the touch. Then a bump appeared on my left shoulder blade. Yesterday I had an appointment with Dr. G and lo and behold! A third bump had appeared on my head, overnight.

Dr. G decided to do a punch biopsy of the bump on my left shoulder blade, just in case. He says he doesn't think it's cancer but better safe, etc. He gave me plenty of lidocaine so that nothing hurt, and put a bandaid over the sutures.

Yes, it's possible to have scalp metastases. My friend Josh has several and they trouble him greatly, so much so that his docs recommended treating them with radiation.

We'll wait to see what my biopsy results are. In the meantime Dr. G asked me to re-start the toremifene.

update on 10 for february

Last week, I joined a BlogHer Group committed to getting ten things done in February. In the spirit of accountability, here is my progress thus far:
 
1. Finish sewing the eyes and mouth on D.'s sock monkey hat.

Still to do, but D. has really stepped up the nagging, so I promised him that I would get it done by Friday.


2. Graft the toes on my sister's socks (both these projects have been very, very close to finished for months. It's embarassing). 

No progress yet.


3. Make soup twice twice.

I made sweet potato soup with roasted garlic. It was extremely labour intensive (and I made it worse by not paying attention to the directions and, instead of slicing 12 sweet potatoes in half, I sliced them all thinly. It was ridiculous and made every other step ridiculously complicated) but delicious. And I froze some to eat during chemo week. Very pleased with myself.


4. Read 6 books, including Generation X: Tales for an Accelerated Culture, Good to a Fault and The Jade Peony

So far, I've read four books, inclduing Good To A Fault (loved it!) and Generation X (meh). One of the books (Dragonfly in Amber, the second book in Diana Gabaldon's Outlander series) was almost 750 pages long.


5. Average 6 hours of walking every week (I was doing this easily for a long time but have slacked off and I'm feeling it, as are the dogs).

I've decided to change that to 6 hours of cardio (of any kind) per week but I've still only been averaging 4.5 hours.


6. Re-read the first draft of my novel (haven't touched the thing since completing NaNoWriMo).

I've read the first forty pages. It doesn't suck as much as I was worried that it would. In fact, there are some bits I actually liked.  I find it exhausting to read, though - not because it's heavy or difficult but because I wrote it. Can any of you relate to that feeling?


7. Write something 3x every week (I have been anxious and procrastinating. I thought that setting the bar low might help).

I wrote, for at least a few minutes, four times last week.


8. Organize my clothes.

Haven't started. Unless you count putting one pair of pants that don't fit anymore (wore them a few weeks ago but couldn't do them up on the week end) where they won't make me feel so pissed off at myself.


9. Go skating (I live steps from the Rideau Canal yet I didn't even make it out once last year).

I went once with my family and twice on my own!


10. Send a card to my Aunt, with the photo we took in the summer.

I really do need to get to this one. It's something I've been wanting to do for some time. I don't know why it keeps getting pushed down the to-do list.

Anyone else have any progress to report?

Hair Coming In Slowly

Yesterday I headed off to the grocery store to get some coffee. On the way back, the family next door were just pulling out of their driveway and I stopped to chat. It was a gorgeous sunny day to be out and about. R said ... “You have a few tuffs of hair showing from under your hat.” I whipped off my Beatles cap to show her... the same style cap that Ringo Starr used to wear way back when. I was so proud to show off my new found locks... especially since the Onc said hair won’t grow back under Xeloda.

My hair is coming in a bit greyer than before ... and it’s not a full head of hair either. But what the heck ... its hair and I’m not complaining.