Lung Cancer -An Activist's Road Trip

2010 Summary

2010-12-12T11:48:00.000-05:00

What a year it has been. Most recently we finally were able to learn that the "definitive Study" on early detection of lung cancer has published the results of this landmark trial. Early detection of lung cancer saves lives and Spiral CT screening was found to be more effective than Xrays in detecting early stage lung cancer; the question becomes what will now been done with this information.
Additionally, this year has proven to be filled with advances in treating lung cancer; personalized medicine - the individualization of treatment is becoming the norm. Genetic testing of tumors is becoming increasingly more important in determining treament.
The above just a few of the strides that have been made. Our fervent hope is that the pace is accelerated in the year ahead

The future of lung cancer advocacy

2010-09-29T16:31:00.003-04:00

What is lung cancer advocacy and what is the goal of those advocates? Are the "lung cancer advocacy groups" working at optimal efficiency? Those are some of the questions that should be asked. The first one is easy - anyone who tries to impact current incidence and mortality rates associated with the disease could be identified as an advocate - that includes the medical profession. I would add the word activist - an overt effort to effect change.
Now are any of the myriad lung cancer nonprofits (including ours) working at optimal efficiency - alas that answer is a resounding NO.
Why do I said that? Firstly let's divide the nonprofits into those whose primary goal is raising funds for research. With all due respect and with accolades for their efforts, none of them have raised significant dollars. What if groups like Lungevity, United Against Lung Cancer, Lung Cancer Foundation of America and New York Lung Cancer Foundation would combine efforts; what if they would staff one or two PHd's to vet their collective projects (not rely on outside Scientific Advisory Board) wouldn't that really make a difference?

What if the one or two national lung cancer groups that are battling each other to create state chapters would abandon that effort and redirect their focus to a national public awareness campaign? Currently they are tripping over each other; wasting money on summits whose primary purpose (not broadcast) is to scout out potential organizers to further their individual branding. Unless a health oriented nonprofit is focused on grassroots patient services there is no need for state chapters and all the overhead that goes along with it. Limited funds need to be spent wisely. The campaign to brand an individual group, t us, is not spending money wisely. More to come

well intended

2010-09-25T17:15:00.002-04:00

This past week was the anniversary of my mother's death as well as her birthday (on the solar calendar). It was a time for reflection of things past; some things better forgotten however I'm not that good. I recalled a time when someone, for reasons that were never quite clear, filled syringes in anticipation of their being used, not when they were needed and probably devalued any impact the medication could have had. What was he thinking? Damned if I knew; maybe the intentions were to help my mother; in all probability it had to do with him; like everything else in his life it was (and probably is) all about him. How sad (for everyone concerned).
I had opportunity to remember that when I was my mother's primary care giver it was always about her - she came first - To this day that's what being a care giver is all about; yes there is a need for balance however one must never forget what comes first.

Communication: a new age old problem

2010-09-01T14:00:00.002-04:00

These days, probably been going on for a long time, trying to communicate is becoming increasingly problematic. Actually it's not the communication; it's the other person's comprehension. Why do I know what I think I am saying and quite often there appears to be a disconnect. So why would it be so surprising that 15 minutes in a doctor's examining room is filled with minefields.
I went to the doctor (new PCP) with a list but she would have no part of it. I completed the questionaire in advance however no one seemed to read it. The new office was sent a copy of previous medical records however no one really cared.
I will not let this go however learned, much to my chagrin, that my experience was not an anomaly.
Now, to the best of my knowledge, I have no serious medical condition. Just imagine if this was an oncologist's office or a some other specialist. This cannot be allowed to continue.
I have a call into the office manager and will share my concerns. If I don't get satisfaction, this will be a very short relationship

Mabel Wilson's Lung Cancer Journey

2010-08-27T08:15:00.002-04:00

Mabel Wilson, now 91- 1/2 lives in Mount Savage, Maryland. Diagnosed with adenocarcinoma at age 90 she chose a right thoracotomy and right lower lobectomy which was offered to her as the best option for a normal life. After a recuperation at her daughter's house she chose to return to her home and continues to live alone, but not really alone- a supportive family, caring physicians and overall good fortune continue.

Meeting Mabel Wilson's Granddaughter

2010-08-27T07:14:00.002-04:00

It happens everytime; I go to a meeting, the theater or such and inevitably begin some dialogue with someone. That happened in DC several months ago. Mabel Wilson's lung cancer journey was conveyed to me by her granddaughter. While individual stories of courage are always heart warming, this was really significant - Mabel is 92. more to come

Lung Cancer Awareness is not an Oreo cookie

2010-08-19T17:12:00.002-04:00

Lately I have been discouraged by the notion that so many nonprofits regards driving their mission as synonymous with selling an oreo cookie. On the one hand the television ads are so creative; really wish that some advertising agency would take on the task of reframing lung cancer awareness. on the other hand, what a waste of creative juices. Do we have nothing else but oreo cookies?
I am still a child of the 60's and believe in an ideal. I can only hope it's not an illusion

Senator Orrin Hatch and Chanukah

2009-12-09T16:42:00.002-05:00

As a lung cancer patient advocate I must make every effort to be an optimist; ergo the name of our nonprofit contains the word hope. This Friday marks the first night of Chanukah which essentially is a triumph of hope against all odds. The whole miracle thing about oil burning for eight days when there was only enough for one has, for me, always been a take it or leave it notion - meaning I do not ridicule those who take this event literally. Much to my late parent's chagrin while I have always viewed the events figuratively, truth be told I did not always believe that perserverance pays off. Today I do.
The ancient Maccabeans clung to their beliefs, fought to be who they wanted to be and won. That is the lesson of Chanukah.
Today, Senator Hatch whose political philosophy is to the far right of mine did a good thing; this practicing Mormon wrote not a great song but a fun song for this, one of my favorite Jewish holidays. So there is hope that one day all of us will unite behind religious tolerance. Will give everyone including agnostics and atheists their day in the sun

Personalized Medicine

2009-11-24T09:15:00.002-05:00

Last week I was in Boston attending the 5th annual Personalized Medicine conference, subtitled: The Time is Now. The event was once again held at the Martin Conference Center of the Harvard Medical School. Raju Kacherlapati and his team once again did an incredible job; over 600 people in attendance.
There is momentum; there is a need to bring this subject to the forefront of people's consciousness because I believe, as a patient advocate, that making personalized medicine a reality will result in better outcomes for patients, that cancer as a disease calls for personalization, and that costs will be reduced.
One of the most interesting presentations, for me, came from Jon Friedenberg, VP of El Camino Hospital in California. This is a community hospital that is making genetic testing available to its patients, that is dealing with cost factors and that is achieving wellness for its customers.
More to come on this subject.

Screening for Lung Cancer

2009-10-22T09:28:00.002-04:00

The ongoing screening debate made the front page of yesterday's New York Times. Prompted by a recent study in the Journal of Medicine, ACS has issued a statement on the efficacy of breast and prostate screening - information that some of us already knew -
I was aware of the I rating for PSA's for prostate cancer; the same rating that spiral CT's for lung cancer has; one major difference between ct and psa is cost; another major difference is exposure to radiation - important considerations - to me, all that says is we must work harder to find and get approved a blood test for lung cancer screening.
Today's NY Times article says the debate is complicated - the same argument I get when LCCH presents a nunanced message regarding risk factors for lung cancer. What we've heard from officials is that the public is not capable of understanding a nuanced message. Keep it simple, we are told.
We disagree. If we can develop a constructive, ongoing effort to reframe health messages then the public can be trained to understand what is being said. It must be a continuous effort. I believe it's an injustice to "talk down to people".
The public can understand if it is explained.
The time is now to begin the dialogue of explaining screening and early detection of cancer. The time is now to get an approved method of screening for lung cancer.

Another Day - Another year

2009-09-02T12:50:00.002-04:00

My birthday has come and gone; celebrating in the North Carolina mountains was a first but not a last - the spirit of Asheville and the Blue Ridge Mountains lives on. I met several lung cancer survivors - our paths seem to cross - this time I was not even wearing the large bracelet that generally speaks out to people -the conversation piece that never fails to be the catalyst it is meant to be.
For whatever reason, the future is very inviting.
Work is proceeding, albeit slower that I would want, on our new website - I just looked at additional proofs - it's worth the weight.

Chess Player in a Checker World

2009-08-22T16:36:00.002-04:00

David Plouffe said it well: Barack Obama is a chess player in a room where most are playing checkers. Even though I never mastered the game of chess, I totally understand and relate to what Mr. Plouffe said.
How long have I been saying that those of us who identify ourselves as lung cancer advocates perpetuate the stigma associated with the disease by talking about smoking. There were those who thought then and still think now that I'm simply nuts to say that.
When a "professional" at the recent international lung cancer study meeting said the same thing, some fellow advocates did have an AHA moment - I reach out to those who get it and for those who still are not there yet, I'll just keep repeating myself.

40th Woodstock anniversary

2009-08-16T08:42:00.002-04:00

While I was not at the festival - I was actually out of the country--there are times I feel I was there vicariously --- my late mother and father unintentionally got caught up in the traffic jam. Years later, -having gotten to know my mother during her lung cancer battle - under different circumstances I could see both my parents participating in a festival dediated to peace and love; at least I'd like to think so.
We can't go back so it's onward and upward.
I plan on listening to Santana, Richie Havens and Joan Baez today and pretend that we are back in 1969 - it was a very good year. For many reasons, not the least of which is that lung cancer was not on my radar screen.

It's Thursday and I'm not in Manhattan

2009-08-13T10:29:00.002-04:00

I was on my way to Manhattan and a UN rally and got sidetracked. I guess they will manage at the UN without me. The rally is about the genocide in Darfur - my connection is that as a child of Holocaust survivors I feel strongly that I must lend my support to the international efforts to stop the killing. On more than one ocassion I've stated that my late mother survivored the horrors of Nazi Germany to succumb to the ravages of lung cancer. That's the connection. As I get older (I have a birthday coming up on August 28th), I become more cognizant of the thread that has remained one of the few constants in my life - growing up a "2G" and being an immigrant.
What kept me here? A meeting this evening of our condo association - there are impediments to selling the house I live in; situations that I can no longer ignore. So this afternoon is being devoted to the "joys" of condo living. I say Never Again - which is a term often used by survivors.
As for the business of this morning. Our website redo is coming along beautifully; I really am counting the days until it is uploaded; exciting innovations which I believe will ultimately impact lung cancer statistics - this is not hyperbole - this will really happen. Stay tuned.

It's hot

2009-08-10T18:37:00.002-04:00

The hottest day of the year - just a few days ago I was in San Francisco wearing a sweater. We hit triple digits today and I must confess I found time and ran off to the boardwalk. My only excuse -- to myself-- was that the doctor's appointment that I thought would consume my day, was postponed until Wednesday.
We are definitely making headway on the new website; I'm really excited and am counting the days until it is finished.
I also had to spend sometime on what's going on with my condo community. After the community forum of Sunday night there were follow up phone calls. What you may ask does this have to do with lung cancer; well I would never have been living here if it wasn't for lung cancer. I was my mother's primary care giver - an opportunity for which I will be eternally grateful because it gave me a chance to get to know my mother - the circumstances were unfortunate; the interaction - priceless. I should have sold the place several years ago but didn't. No woulda, coulda, shoulda - I'm just going to make a decision as to where exactly I will be living and then.... -
Registered for another lung cancer symposium coming up next month. I find that it's helpful to attend these events - incredible learning opportunities.
Tomorrow is a networking night.

Reception at Moscone Center

2009-08-10T11:30:00.001-04:00

International meeting

2009-08-09T10:48:00.002-04:00

I woke up this morning and could not ignore the fact that I'm on this road trip and haven't checked in. Truth is that I was extremely busy getting to see Merel Streep in Julie and Julia as well as Pilobulous Dance group. I recommend both - the film in a theater near you; not sure about the next scheduled dance performance.
I need to say more about San Francisco and the meeting. While it was an incredible learning experience my major disappointment had to do with the fact that in terms of risk factors other than smoking, nothing was highlighted. There was a session on women and lung cancer - how it can be a different disease but that required a special ticket. I do know that the research is focusing on estrogen levels as a risk factor but I have nothing more to offer at this point. Like others, I'll just have to check on line and in various periodicals for updates. I'm also going to register for some of the continuing ed sessions that are out there. Two coming up in September and November in NY and Philadelphia. I'll become a groupie following the usual suspects -- you see I took a look at the faculty for both sessions and am acquainted with every "Professor". Maybe I should begin grading them????
We need to talk about radon. Yes, it's been identified as the cause of ONLY 21-25,000 lung cancer deaths but, for most of us every life has a meaning - it's not just a statistic and if we can potentially save that many lives, I simply don't understand it. This is not about "more bang for the buck" - what a horrible statement when it comes to discussing human lives.
Got to go. I am the facilitator for a community forum later today and need to prepare - we are organizing our condo community. I should know better after my tenure as an officer of my coop board. In my defense I can only say there is a method to my madness which may become apparent with time.

FrancisCollins

2009-08-07T13:01:00.003-04:00

Good news: at 12:07 PM Francis Collins was confirmed as the new NIH director. While I probably know better, can't help but think that yesterday's blog entry was read. Now onward and upward

Francis Collins for NIH

2009-08-06T17:59:00.003-04:00

Sorting through all the mail that accummulated while I was in SanFran I came across Newsweek; Lisa Miller writes about Francis Collins' nomination for NIH director - which is in a holding pattern waiting for the Senate Health Committee to recognize that it really can do more than one thing at a time.
I had the pleasure of meeting Francis (it seems he wants everyone to call him by his first name) at a hootenany that took place at the annual Genetic Alliance meeting. Yes, he is "born again" and I am not but no mattter. I would urge all of us to do what we can to speed his nomination along;while I may not agree with everything and everyone at Sloan Kettering, I do agree with what Harold Varmus (Sloan's director and a member of the selection process))said about Dr. Collins. Other NIH positions as well as NCI positions need to be filled as quickly as possible - approving Francis Collins is step number one on the road to personalized medicine

San Francisco and the Fog

2009-08-05T15:08:00.003-04:00

Just got back from the International Lung Cancer Conference in SF. While the fog hung over our heads every morning,eventually it did lift - just like the progress we are beginning to make with this disease. what incredible people- oncs from all over the world - this was by far the largest gathering of lung cancer specific professionals. I had the rare opportunity of speaking with the leaders of the field - those who are going to help us find the cure.
On the advocates side, I missed the meeting; was delayed because of a medical issue, I missed the bus - got extremely different feedback from those attending -for now let's just say it's not yet ready for primetime -- looking forward to the future - collaboration and consensus and being focused on the greater good.
The best and the brightest had time to talk to me and explain what they are doing. I feared not getting "out" - to be in SF and not walk one end of Powell to the other was not acceptable. I managed to see the Okeefe/Adams exhibit as well as the Chagall exhibit which I missed seeing in NYC.\

Had a glorious dinner with two special people at Gary Danko's. Highly recommended - no need for reservations if you sit at the bar. Also got to dance, dance, dance with folks you would not expect to be leaping out of their chairs - the guy from Ireland was great, as was the man from Tennessee (not Galilee)- didn't think the docs could move those hips.
New staging system for lung cancer - look forward to seeing surgeons with their cheat sheets trying to figure it all out.
More on the advocates side - we really need to reframe this issue - can't keep on talking about the stigma associated with lc - we keep on repeating ourselves.
More to come! Stay tuned

Personalized Medicine and Lung Cancer

2009-07-21T19:01:00.003-04:00

Branching off from the lung cancer advocate's path that I aम on has brought me to the issue of personalized medicine, genetics and the future of cancer research. Now is the time, as we debate the reform of health care in this country, to begin looking at the macro not only the micro, silo approach. The cancer research focus must evolve; it's not the silo approach - it's genomics, its the molecules. Let's see if we can get the dialogue going.
Also let's see if those who identify ourselves as being in the "lung cancer world can begin focusing on the macro picture - on the coalition that can "make it happen". Sharing is caring.
This is all hot off the press from DC where I had the distinct pleasure of meeting the Director designee of NIH - Francis Collins - a true renaissance man - his spouse is also pretty terrific

5 Days in Orlando

2009-06-05T18:27:00.003-04:00

ASCO has come and gone. The really good thing is that the rains that plagued Orlando for weeks ceased on the second day of the annual meeting. While it is unfortunate that registration was done by more than 30%, it did give me an opportunity to interact with more people, attend sessions that were not packed and witness less smoking. I'm still taken aback from I see a medical professional, especially an oncology specialist smoke - I know it's an addiction, but...
There are drugs in the pipeline, there are Phase II and III clinical trials but alas no breakthroughs.
Know that I've been to several annual meetings, I'm acquainted with more people, more advocates as well as docs. I had the ocassion to speak with Otis Brawley of ACS telling him why the American Cancer Society needs to reframe their approach to lung cancer. I was really getting into this conversation; I was restrained by a fellow advocate (who shall remain anonymous for now) who admired my passion but suggested I cool it. He helped me "cool it" by buying me a drink. I guess suggesting to the Medical Director of the American Cancer Society that often they are the 800 pound gorilla in the room is not .... whatever. I thought it was the righ thing to do.
Never got to Disneyworld but that was never the point. More to come on the meeting and the role of advocates in the fight against cancer

Its ASCO time again

2009-05-26T14:55:00.003-04:00

How quickly a year passes. I am once again preparing to attend the annual meeting of the American Society of Clinical Oncologists. Truth be told, I am flabbergasted that I actually understand what is being said at many of the scientific sessions. Yes, it is a networking opportunity - and I do my best. My primary purpose in attending is to learn about any cutting edge advances made in this cancer world.
I do hope that the smoking that went on at last year's meeting in Chicago is kept to a minimum. I was rather amazed at the number of doctors smoking; on the other hand I shouldn't be since like any addiction - it is not rational.
I've also had some epiphanies which I will share as soon as I flush out the details. It's really exciting.
If I learn anything exciting I will share it with every one out there.
For now I just wish the Orlando rain will stop.

Reframing the Issue

2009-05-18T21:03:00.002-04:00

I continually ask myself: what can I do to change the dialogue? I'm on several lung cancer listserves. What's one element they share in common: the question of how can we get the masses to pay attention; how can we raise the profile of this insidious disease? These days I think we need to not only find the right message but target a new audience. It's not the physician community, it's not the public policy makers - they will follow the leader. What I have to do is find the leader. HELP

2009-05-14T19:39:00.000-04:00

Today is day one for this Blog and so I welcome all who will "hear me" and accompany me on the Trek- the arduous journey to find the cure for lung cancer. Why today? Today I addressed members of the NJ Senate Budget and Appropriations Committee.It is not an every day experience driving to the State House in Trenton, going through three different security checkpoints, finally to be admitted to the huge, elegantly appointed committee room, where my name was added to the "list".
I was prepared to spend many hours sitting and waiting my turn - another lady waiting brought her knitting- however I was lucky, as the Committee Chair changed the agenda and within minutes it was my turn to speak. I thought I would be nervous however the words just poured out. I shared with members of the committee what I have learned since becoming a lung cancer advocate- why it is important to increase research funding and why smoking cessation alone will not erradicate this disease. Members of the committee needed to hear that lung cancer research is significantly underfunded in comparison to other site specific cancers. They needed to be told about people like my late mother who never smoked a day in her life amd yet was diagnosed with late stage inoperable lung cancer.
But what makes this day more significant for me? Of late, I have been questioning if anything I've done as a lung cancer advocate has made a difference and on this day, in Trenton, once again I was given an answer to this nagging question. The lady with the knitting looked at me and saw the brochure in my hand -she stared at the words LUNG Cancer. Her brother was just diagnosed with the disease. Our conversation became animated as I shared with her what I have learned - and believe you me I have learned more about this disease than I ever wanted to know. Speaking with this stranger I was reminded as to why I founded the Lung Cancer Circle of Hope. It's reaching out, if need be, to one person at a time - finding the links in the chain - reaching the tipping point that will lead us to the cure. And that's what this is all about