Latest CT scan

Hi everyone, 

Laurie had her latest CT scan earlier today and we are relieved to report this is the first one that does not bring bad news in quite a while. Deep breath and thanks. While the news is not that of a cure (not on the table at the moment), there is no new growth to report and that is a victory in itself. There are signs of something in the original  tumor sight of the pancreas (unsure if an active tumor or scar tissue remnants of the nanoknife surgery she had in April, but not growing in size), a small spot on the liver that is the same size as previously, and a growth remaining on the lungs (not completely sure it is cancerous, but suspicious) that has shrunk. Again, although not a cure (which technically doesn't happen at stage 4) there is no progress and some shrinkage. We'll take it! 

From here, Laurie continues on every other week chemo which she is tolerating relatively well and we get to have a holiday season that's got some light shining into it. Given what the possibilities were of what we'd find when Laurie went in for the CT scan this morning, we're glad to be reporting on this one.

Thanks for being there with us and for us.

thanks and love, 

Neal

Marathon Sunday

Check this out on Chirbit

Check this out on Chirbit
Today would have been the day we completed the NYC Marathon together as a family. Above you can hear both of the interviews done of my mom in anticipation of this event. Since the marathon was canceled, she will just have to stay well long enough to do it next november and many thereafter.

Tracey

Mixed Report

It's been a while since the last update as Laurie has been back on chemo for about three months to address the spread of cancer to her liver (seemed to be one small spot). She managed the treatment much better this time, feeling out of commission only a day or two each two week round. 

Because of how much stronger she's been feeling, we were hopeful that the results of last Wednesday's CT scan would reflect good things. However, the news was more mixed. While the original lesion in her liver has not progressed (the positive), another small tumor showed up in her lungs (not so good). 

Her oncologist, Dr. Yu, said that the lungs are a place where treatment is more successful, so we are hopeful about that, but certainly surprised and disappointed not to have gotten a more completely positive report. 

She's gotten a temporary reprieve from chemo and will resume a revised "cocktail" on November 12th. 

If it was all about attitude and spirit, however (and we still believe that must count for something), Laurie would be in excellent shape. She has not much self pity and a lot of living life in a zestful way. She is planning to complete her 15th NYC Marathon on Sunday November 4th  (and has dragged me and Tracey into it as walking companions....that's another story) and is leaving for a Disney cruise with Tracey and the grandkids on November 6th. She is actually featured in the official marathon magazine as an inspiring story and is to be interviewed this Monday by a reporter from WCBS 880 radio station who read the story. 

Also, in the spirit of living life and bringing more love into it, last week we added a wonderful 9 week old Portuguese Water Dog (looking for a playdate with Obama's Bo) to our family. His name is Paco (short for Apocalypse) and he has already bonded amazingly with Laurie and almost as much with me (I'm an absentee working father on weekdays and making the most of weekend time together). After a career working with disabled folks, Laurie has decided to appoint Paco as a "service dog" for her, which means she is entitled to take him anywhere.....and he's already been on the subway, the bus, grocery shopping, to chemo, and to the movies (a Noel Coward classic at the Film Forum....true!).

Anyway, please keep us in your thoughts and hearts and prayers. It means a lot to us to know there is an extended "team" out there rooting.

thanks and love----Neal, Laurie, Tracey, and Paco

as seen in NYRR Club Magazine

New Doses

Hi all, 

   It was a low key, but potentially productive appt with Dr. Yu this morning. In response to Laurie's difficulty tolerating the last two rounds of chemo, Dr. Yu is going to adjust the dosage. He said not much will be lost, and if it helps Laurie not suffer as much for most of a week,  it seems there could be a good gain from the adjustment. We also told him that we had set a tentative appt with Dr. Mitchell Gaynor, an alternative oncologist who focuses more on diet and supplements, and we asked Dr. Yu's opinion. Despite expressing skepticism from a scientific study poiint of view about anything adjunctive, he was not adverse to us having a consult with the caveat that we run any prescribed supplements by him before beginning use. 

    That's all the news that's fit to print for tiday!

                   thanks for being there----Neal and Laurie

Exceptional

Laurie's visit with her oncologist, Dr. Yu, went as expected today. He confirmed that her cancer has metasactized to her liver and may be in other places as well, but that will not affect her treatment. The treatment is that she's starting chemo again today for a round of two to three months at which point there will be another evaluation. Today was not as devastating as last week, simply because we were prepared to hear today's news. 

Laurie will likely be on chemo, with possible breaks, for the rest of her life.

As for longevity, Dr. Yu said he's seen "exceptional" folks in a similar state as Laurie live for 5 years (The clock began ticking with Laurie's diagnosis nearly a year ago). Asked to define "exceptional", he spoke of it in terms of how their cancer responded to treatment and not their attitude, spirit or personality. However, on the level of attitude, spirit, and personality, Laurie seems in a league of her own. She completed a 5 mile race on Saturday and has committed to working on her swimming in order to complete the Central Park triathlon next August. She is also continuing to attempt to boss those closest to her around---with decidedly mixed results. In other words, there is a lot of life left in her no matter the diagnosis. 

As always, keep us in your thoughts and prayers with love.

with love,
Neal, Laurie, and Tracey
  

Dr. Yu's Review

Hi all,  

Hot off the press (and not just the outside weather): much to Laurie's delight (perhaps near ecstasy, perhaps kid in the candy store) her oncologist Dr. Yu gave her at least a temporary reprieve from a return to chemo today. She has been feeling much better for the last ten days and he wanted her to have a longer time of feeling better and stronger before making a next chemo move. 

So the plan is that she'll have a CT scan again at the end of the month and then we will take it from there. Based on the amount of chemo Laurie had before nanoknife and what shows on the CT scan, it is also an option that she will not go back to chemo at all. 

Hearing this news---which was not our expectation going into the appointment--- was like the governor called right before walking out of the jail cell to face the firing squad. As I said, Laurie lit up in delight. So, as always on this venture, even though the future is unknown, today was a good day and we're both happy to share this latest step with you. 

with thanks and love,  

Neal and Laurie

Dr Watkins at Stony Brook

What a difference a week makes! Or....what is reality?

Last Monday at our Sloan consult Laurie was told that it seemed there was still active cancer in the innermost part of her tumor. She proceeded to go home and vomit up blood, be taken by ambulance to NY Hospital with an upper g.i. bleed, and come home after 4 days to spend the long holiday weekend zonked out cycling through pain/nausea meds and sleep with no energy and a crushed spirit.

Today the roller coaster zoomed right up. We met with Dr. Watkins, the surgeon who operated on Laurie with the nanoknife in Stony Brook. His take is that the pain and suffering Laurie has been experiencing currently and since the operation on 4/4 is post surgical and not cancer. He saw no evidence of the spread of cancer and, in fact, he believes the entire tumor is dying spontaneously---liquefying and draining off and creating an air caviity---thus causing Laurie's pain and digestive issues. Although it is possible that this could naturally resolve, Dr. Watkins prescribed an anti-biotic and will also probably schedule an endoscopic ultrasound in a couple of weeks to check on the air cavity and attend to it further then if needed.

Coincidentally, Laurie's energy seems to have come back at least slightly today, too. Upon arriving back into Manhattan, she insisted I drop her off rather than drive her to do an errand. After spending the last few weeks either in the hospital attached to i.v.s or curled up in bed in pain or asleep with torturous  food network t.v. shows (my opinion) persistently playing in the background, her insistence on being dropped off showed shades of the Laurie we all know and (some of us) love.

Of course it is only one day and one MD's opinion (Whoever said medicine was an exact science?), but in the path Laurie has chosen, his voice and opinion are important, and let's hope he is in fact right!
As always, thanks for all the caring and support of all of you out there. It continues to mean so much.

with love, 

Neal

Pain Management

Hi all,
After another very uncomfortable day for Laurie in which she seriously considered returning to the Sloan ER because of her pain level and not being sure of the cause, we spoke with Dr. Watkins, the Stonybrook surgeon who did the nanoknife procedure on her almost exactly one month ago. Dr. Watkins had reviewed all of her latest info (including CT scans from earlier this week) and did not see evidence of tumor or cancer related causes to her current pain. Rather, he suggested that it was her body still recovering from the surgery and that she needed to "get over the hump" and made a few suggestions to tweak her current pain med approach as well as a couple of simple exercises for her to do. He also recommended that if she wasn't feeling better in a week that it might be a good idea to consult a pain management expert.
Thus ended another trying week, but with good news --- at least for me. For Laurie, the best news at the moment would be to start to feel more comfortable and less in pain. Let's hope that isn't too too far around the corner.
love---Neal

Hospital Stay

Hi all,

More good news to share today. Laurie has made remarkable strides in recovering relatively quickly from her major surgery. After a few days in great pain and mainly only wanting to groan and sleep, she woke up like a wilted flower that finally got watered today--full of renewed energy. She's up and walking and eating for the first time and it looks like she'll actually be discharged tomorrow morning!

Dr. Watkins, her surgeon, told us that a CT scan from yesterday confirmed that it seems the operation went well. There will be more information that we will get in the next several weeks and six months (upcoming CT scans) that will let us truly know the impact of this week's events, but we are excited to have taken this step.

There are more hurdles to come (including 6 more months of chemo beginning in about another month), but this procedure at the very least effectively keeps Laurie in the race. And after 25 marathons and with a fighting and enjoying life spirit, that's lots to feel positive and hopeful about in this moment.

As always, thanks for your great support and love, so take a breath and then keep it coming!
with love,
Neal

Surgery in a few days

I am having nano knife surgery at stony brook university hospital this coming Wednesday. I will be in the hospital between 5 and 10 days. As I am not able to get the whipple surgery, this appears to be a hopeful alternative. Following my surgery I will need at least six months of chemotherapy. Again, thanks so much for all of your love and support.
Love, Laurie

meeting with Dr. Yu (post radiation)

Hi all,
CAUTIOUSLY OPTIMISTIC!!!! Those were the words Dr Yu at Sloan used to describe Laurie's newest cat scan. The tumor shrunk a little, it appears that it has not spread to any organs, and has moved away slightly from some of the blood vessels. He will talk w/ the surgeon and get back to Laurie about the option of surgery. In the meantime, Laurie has an appt. at Mt Sinai w/ a surgeon who has been very supportive of the surgery option this Wed. So we got the best possible news this morning and now ready to go to the next step!!!! Marathon next Nov., is on the table!!!!!!!! Will advise you all of the latest updates, it is a possibility that Laurie could be in surgery within the next 2 weeks!!!! Keep the good thought coming!!!!

The Best to all,
Robin

Support Cancer Support Community

If anyone is interested, this is my local cancer support organization. I would like to participate in this with "Team Laurie". Please contact me so we can be a part of this event:

IT'S THAT TIME AGAIN!!!!! Time to join the CSC STRIDES for HOPE 2012 TEAM! - Run the NJ Marathon (Raise $500) - Run the Long Branch Half Marathon (Raise $300) - Enter as a team and do the relay! (Raise $300 per team) SO MANY OPTIONS FOR YOU! RACE DATE = MAY 6, 2012 comeraderie! fun! get in shape! make new friends! Support the Free Programs at the Cancer Support Community! JOIN TODAY - TRAINING BEGINS JANUARY 30th! Dear Friends - JOIN OUR 2012 STRIDES for HOPE team! No prior running experience necessary! We will train you to finish whatever event you choose to enter! Here are just some of the benefits you get by joining our team (in exchage for MINIMAL fund raising to support our free programs for peoiple with cancer): - Paid entry fees - Personalized training program - Running attire - Group training runs - MANY, MANY perks on race day!!!!! E-mail me today if you are IN! ilene@cscjerseyshore.org JOIN TODAY!!!!!!!! Training begins the week of January 30th! Our first get-together as a team will be a VERY special EVENT at Road Runner Sports in Shrewsbury - JUST FOR US!!!!!!! DON'T MISS OUT... JOIN THE TEAM TODAY!!!!!! Ilene L. Winters CANCER SUPPORT COMMUNITY - The Diney Goldsmith Center 613 Hope Road Eatontown, New Jersey 07724 (732) 578-9200 www.cscjerseyshore.org