Living with Lung Cancer: Stephanie Dunn Haney

November is National Lung Cancer Awareness month.  The Bloomsburg Daily had the opportunity to chat with Hemlock Township Manager, cancer advocate, mother of 2, and lung cancer survivor Stephanie Dunn Haney.  Stephanie relayed her experiences with cancer, her hopes for her young children, and her determination to battle the stereotypes and stigma associated with her illness.

For Stephanie, it started with a “funny pain” in her right side when she sneezed or coughed.  She didn’t want to bother her doctor with her seemingly minor complaint, and soon she became pregnant and was busy with a new baby to care for.  They wouldn’t do an X-ray on a nursing mother anyway, she thought.  The “funny pain”  failed to resolve, and after a year and a half, Stephanie finally consulted her physician.  In an attempt to diagnose and treat her symptoms, the next two years were filled with a battery of tests and treatments. Stephanie underwent an EMG (nerve conduction study),  an Ultrasound of her gall bladder, X-rays, and an MRI, all of which were negative.  She was referred to a neurologist, a chiropractor, and even to physical therapy, which were also unsuccessful in alleviating her symptoms.  Finally on October 3rd, 2007 after  approximately three and a half years of unresolved symptoms, the diagnosis came after a CT scan came back positive:  lung cancer, non-small cell lung cancer, stage IV. Even then, her surgeon told her it was probably not lung cancer as she had never smoked and had no family history of cancer, and a surgical biopsy was performed.  This procedure confirmed her diagnosis the same day.

The stage of cancer refers to the tumor’s size and to what degree it has spread to other parts of the body.  Stage IV is the most advanced stage of lung cancer, and about 40% of patients newly diagnosed with lung cancer are already in that stage. In this stage of lung cancer, the tumor has spread to another part of the body and as such is considered inoperable and incurable. Treatment options, while available, are limited.  This type of cancer also has a very low survival rate, with only about 15% surviving 5 years or more.

While Stephanie notes that the first year after her diagnosis was spent dealing with grief and loss, she states , “I eventually got mad,” and became an advocate for lung cancer.  Stephanie points out that lung cancer kills more people than prostate, breast, and colon cancers, and melanoma combined, and yet it has very little funding.  She also notes that  lung cancer is a highly stigmatized disease, and that people tend to want to place blame on patients with lung cancer for contracting the disease in the first place.  She was frequently asked questions that would indicate some sort of cause for her illness. “But I have no risk factors.  I never smoked.  I have no family history of cancer.  This is not necessarily an environmental disease.  I provide an example that stretches people’s understanding of the disease.”

Stephanie and her friend Rachel Troychock have also been active in their fundraising efforts for lung cancer research and awareness.  Team Haney, the local group walking in the “ Free to Breathe National 5K” campaign, was organized in 2008 and has managed to raise more than $43,000 over the last 3 years.  The funds raised by this event benefit the National Lung Cancer Partnership, a non-profit organization dedicated to research, advocacy for patients, and increasing community awareness of the disease. Stephanie has also been involved with the Lung Cancer Alliance, a group whose main directives are to lobby for federal funding for research, increase awareness, and to provide patient support.

Through her advocacy efforts, she  strives to be a role model for her 2 girls, now ages 6 and 8. “I want my kids to learn how to be their own advocate, how to handle adversity, and how to fight for something they believe in.”

In February of this year, Stephanie entered into a clinical trial of Crizotinib, and  on August 26th, the Food and Drug Association (FDA) approved the new drug for the treatment of certain lung cancers. Crizotinib (brand name Xalkori ) has been effective at treating patients with a specific genetic mutation called ALK (anplastic lymphoma kinase).  This mutation is often found among non-smokers who have developed non-small cell lung cancers, and Stephanie has this gene.  According to the FDA, 50-60% of patients in the clinical studies for Crizotinib experienced complete or partial shrinkage of their cancer.

Currently, Stephanie remains in the clinical trial, and she continues to have the tumors though she claims she is “living with stable disease.”  This past August, a brain tumor was discovered and she was treated with Cyberknife.  She continues to get scans every 6 weeks and she is monitored by her oncologist.

Several fundraising events are planned for this month; please see the events calendar for details, or contact Rachel Troychock at racheltroychock@hotmail.com:

November 5th:   Free to Breathe National 5 K walk at the Columbia Mall.

November 19th:  Pancake Breakfast at Applebee’s

November 20th:  Longaberger Basket and American Girl Doll Bingo at the Buckhorn Firehall

Raffle:  Purchase tickets for a chance to win an iPod2; drawing held November 20th

 

 

 

The Truth About Numbers

With the devastation that was brought to the region by Hurricane Irene and Tropical Storm Lee, it seems as though everyone has been scrambling to find statistics that accurately depict the damage that the community has endured. Statistical accuracies are proving quite elusive however, and the amount of numbers circulating about the region are enough to make one dizzy.

One can look to FEMA and the number of persons who have applied for aid as a reliable source of quantifiable data from the region. Eugene Brezany, spokesman for FEMA, confirmed that as of Oct. 11th, 2,238 applications have been received for Columbia County. Of those, 1,876 appear to be from renters or private property owners; the difference between the two figures would include business owners or those who were not eligible for aid. But even these statistics are not necessarily all encompassing as there may be others who have filed privately with their insurance and not with state or federal officials.

The numbers recently provided by the Red Cross for Columbia County were only a fraction of what was initially estimated in damages to private property. The updated estimates included 141 homes destroyed and 661 homes with major damage, 465 with minor damage, and 621 affected in some way for a total of 1,888 homes either damaged or destroyed by the flood. These figures were based on home to home assessments performed by Red Cross Damage Assessment teams.

The day after these revised statistics were printed in the Press Enterprise (paywall) newspaper, their headline news read “Official: Flood ousted 2,000+ families.” The article (by Peter Kendron, 10-5-11) cited Rich Kisner of the Columbia County Housing Authority as having estimated that this number of households “may have” been displaced. Furthermore, this appears to be based on Kisner’s analysis and interpretation of flood maps for the region.

When contacted by the Bloomsburg Daily for clarification, Kisner explained, “My comment is based solely on flood maps. There are 2000 homes in the 100 year [flood] zone and another 1000 in the 500 year [flood] zone. We believe that the water level, in most areas, reached at or near the 500 year zone. “ He went on to say that his estimates derived from the flood maps were indicative of the number of homes affected by the flood and that the numbers “do not mean that families are displaced.”

The number of families displaced by the flood is something considerably harder to pinpoint than the number of homes damaged or destroyed. Rita Inklovitch, executive director of the Bloomsburg Chapter of the Red Cross explained, “Bear in mind, that people displaced covers a lot of scenarios; temporarily or permanent displacement. Many people are displaced only while they clean up because of mold and other issues and may have minor damage.”

There may also be persons who are staying with friends or family and have so far escaped inclusion in a statistical analysis. Nonetheless, concrete data is being compiled by the day. In the end, the final tally of displaced is the one that matters the most – the number of people that lost their houses or were permanently relocated because of the flood.

Columbia County Homes Destroyed Down from Over 1,000 to 141

There is no doubt that Columbia County suffered some of the worst damage in the Northeast from the 1-2 sucker punch that was Hurricane Irene and Tropical Storm Lee. Nonetheless, current statistics are much less severe than previously thought. Rita Inklovitch, executive director of the Bloomsburg Chapter of the Red Cross, provided the following revised statistics for Columbia County as of Oct. 2, 2011. The numbers are dramatically different from the damage that was initially suspected, with an initial estimate of over 1,000 homes destroyed in the County, and another 2,300 homes damaged reported by the Press Enterprise (9-16-11). The numbers currently stand at:

  • 141 homes were destroyed
  • 661 homes sustained major damage
  • 465 homes sustained minor damage
  • 621 homes were affected in some way (less severely than “minor damage”)
  • 1,888 homes in total were affected by the flood

Rita explained that the numbers have now been revised as caseworkers from the Red Cross are visiting each of these homes. “Many of the homes were condemned by the local Townships and have been found to be repairable. Even with water on the first floor, most are repairable.” She also noted that the Red Cross Damage assessment teams have completed their work at this time, and these current numbers are much more accurate.

Lycoming County has apparently suffered similar losses to Columbia County. An article by Amanda Alexander of the Williamsport SunGazette (9-20-11) cited the following statistics provided by Phil Petter of the Northcentral PA Red Cross. 340 homes were deemed uninhabitable, with 190 of them destroyed and another 150 sustaining major damage; and a total of over 1,200 homes in that region affected in some way.

Thus far, New York state appears to have even larger numbers of properties sustaining either major or minor damage, but fewer numbers of properties falling within the “destroyed” category. Steve Reilly reported in an article for pressconnects.com on 9-29-11 that over 7,000 buildings were damaged in the greater Binghamton area, which is seated in Broome County, and an additional 47 were destroyed.

In another article by Reilly on 9-23-11, the overall damage from Tropical Storm Lee was estimated at $250 million in the southern portion of the NY state, according to Mike Morosi, spokesman for US Rep. Maurice Hinchey, D-Hurley. Both Broome County and Tioga County are seated in this corridor and both have sustained major damages. “In Tioga County, damage to private property is greater than $100 million, according to Assemblyman Gary Finch, R-Union Sp.”

Another staff writer for pressconnects.com, Nancy Dooling, is currently reporting that over 5000 people in the Binghamton region are still displaced by the flood.