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Why I'm "Here"

I did not choose to be on this Lung Cancer Patient/Advocacy Road; it chose me. Had my late mother not been diagnosed with late stage inoperable lung cancer, I can say with a fair amount of certainty, I would not be on this road. We never considered the possibility of lung cancer because we did not know the facts. Lung Cancer is Not Just for Smokers.
I became an advocate because I did not want one other family to face the shock that our family did. NO ONE IS IMMUNE from a lung cancer diagnosis. My goal is to empower people with information in order to give them a fighting chance. My goal is to reframe the issue of lung cancer in order to address the social stigma currently associated with the disease. My goal is to support increased lung cancer research to find the cure.

Sunday, December 12, 2010

2010 Summary

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

Wednesday, September 29, 2010

The future of lung cancer advocacy

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

Saturday, September 25, 2010

well intended

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.

Wednesday, September 1, 2010

Communication: a new age old problem

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

Friday, August 27, 2010

Mabel Wilson's Lung Cancer Journey

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

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

Thursday, August 19, 2010

Lung Cancer Awareness is not an Oreo cookie

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