Why Lung Cancer is MY Fight

February 21st, 2012 - by admin

By Sue Bersh

http://blog.lungevity.org/2012/02/21/wh ... -my-fight/

I wrote about losing a best friend to lung cancer about a year ago for LUNGevity’s blog. As I have become more and more active with LUNGevity, I have met many, many people whose lives have been touched by lung cancer. They are people who know lung cancer’s M.O.: going undetected until it is in its late stages; having few options for treatment; being associated with the unfair stigma/blame that shadows this disease; taking lives quickly; and leaving people shocked that their options are few. Lung cancer is ruthless.

I lost two people I love to lung cancer. I lost my Grandma Harriet when I was 16, and I lost my dear friend, Elyse (Bernstein) Keefe, 3-1/2 years ago when she was only 45. Both were huge losses in my life, but losing Elyse was what motivated me to take action.

Like a best friend should, I lived Elyse’s lung cancer with her. My heart broke when she was first diagnosed; when her cancer returned; on the day she asked her doctor how much time she had left; when she talked about all of the things she still wanted to do in her life; and countless times in between. And there are no words to describe what I felt when I was holding her hand when she took her last breath. It was the single saddest moment of my life. Lung cancer showed no mercy to my sweet, loving and brave friend. Lung cancer took a second person that I loved — and changed me forever.

Elyse and I had volunteered once for LUNGevity. We promised each other that when she got better we’d volunteer regularly. I have followed through on that for us both. I feel her with me in all that I do for LUNGevity. It’s the most meaningful way I can think of to honor her memory and keep her close. It’s also the only way I can think of to help ensure that others don’t suffer the way she did.

Viktor Frankl, a psychiatrist who spent many years in a concentration camp during World War II, wrote in Man’s Search for Meaning (a book Rabbi Paul Cohen recommend to me when Elyse was sick) that everything in life can be taken from you except one thing: your freedom to choose how you will respond to a situation. What determines our quality of life is how we relate to the realities of life: what kind of meaning we assign them and what kind of attitude we cling to about them.

I lost one of my closest friends to lung cancer. I stared lung cancer in the face with her and it was terrifying. But instead of being angry and sad (and I do have a few of those moments), I have chosen to honor her journey and her memory with a legacy of love and hope. This is the meaning I have found in the loss of someone I love. This is what I have chosen to cling to.

I am honored to be a LUNGevity Board member, and I am proud to be Event Coordinator of Breathe Deep Deerfield. Through my work with LUNGevity, I now have many friends with lung cancer. For my Grandma Harriet & Elyse; for Jill Feldman, Jerry Sorkin and my other friends with lung cancer; and for the almost one quarter of a million people diagnosed with lung cancer last year — this is MY fight now.

I hope that most of you will never know lung cancer. But the odds are not in your favor. It is the number one cancer killer, and 1 in 14 people will be diagnosed with it in our lifetime. It is likely to touch your life in some way. Anyone can get lung cancer.

Please help LUNGevity fund research into the early detection and successful treatment of lung cancer. If you live in the Chicago area, join us for a day of meaning and hope on May 6th at Deerfield High School. Walk, run, volunteer, launch a balloon — register or donate today for Breathe Deep Deerfield.

WE can make a difference in the fight against lung cancer.

Nikole, the loved ones you've lost are lucky to have you keeping the fight alive in their honor. And we, the lung cancer survivors, are lucky too and thank you for your efforts.

Judy in KW

_________________
Cytology report on fluid removed from lung after pleural effusion and pneumonia Sep 07 showed adenocarcinoma cells. Dx IIIb NSCLC Oct '07 at MDACC, Orlando. Fol 6 rounds Taxol/Carboplatin/Avastin and 2 Avastin, CT/PET 4/1/08 pleural thickening gone and no active cancer cells. 11/3/08 STILL NEVD. CT/PET/MRI 5/4/09 Cancer back, still in the pleura and chest wall, small amt of fluid, all in left lung.
5/11/09 Start on Alimta every three weeks.
7/13/10 Had Alimta on road in Corning NY.
8/24/09 Scans show some improvement. Continue on Alimta.
9/14/09 Chemo on road in Mt Holly NJ.
10/6/09 Started regular Alimta infusions in Key West.
11/3/09 CT and PET scans showed significant improvement. Some issues already resolved.
2/3/2010 No evidence of residual or recurrent disease. NED! Stay on Alimta.
5/6/10 Am considering myself still NED until/unless proven otherwise in July. Rabid radiologist thinks he sees something suggestive of similar to some abdominal cancer. No light up on the PET. Am hoping for the best. Stay on Alimta and scan in 9 wks instead of 3 mos.
7/8/10 Chest CT unchanged (NED Feb '10). Infiltration in the region of the omentum is probably slightly more prominent than before. Diverticulosis requiring antibiotics.
Jul, Aug, Sep, continued Alimta in Corning NY, Portsmouth OH and Mt Holly NJ.
10/14/10 Chest CT unchanged from Feb '10. Findings likely representing progressive nodular peritonal carcinomatosis in the midabdomen. Treatment changed to Tarceva started in Nov.
12/15/10 Chest CT unchanged. Abdomen changes compatible with peritoneal carcinomatosis again identified with mild progression noted.
3/16/11 CT chest unchanged. CT abdomen progression ascites (fluid). Progression of soft tissues nodularity on the peritoneal surface anteriorly with diffuse omental involvement.
4/13-15/11 Hospitalized at MDA. Removed 4 1/2 litres (8-9 lbs) of fluid from abdomen 4/14. Started on taxotere before release on 4/15.
5/16/11 Hospitalized for fever, neutropenic. Treated with intravenous antibiotic and antiviral. Given blood transfusion. Note that KW Cancer Center did not give me my Neulasta shot after my chemo on May 6. Onc had me cancel my 5/26 chemo until after my scan on Jun 6. Was discharged on oxygen. Test w/Dr Gerth 5/26 indicated I could go off sitting and sleeping O. Will do walking test 6/2.
6/2 Did not get requisite numbers on walking test. Left for Orlando 6/5 still on oxygen.
6/6/11 MRI normal; CT stable. Taxotere and Neulasta at MDA 6/7 and 6/8.
6/13/11 Appointment with Dr Olham in KW. Off oxygen week of 6/16.
8/8/11 CT scan showed stable with perhaps some lessening of fluid. Stay on Taxotere.
10/10/11 CT chest still clear, CT abdominal lining stable. Stay on taxotere.
12/19/11 CT chest clear, CT abdominal lining stable, MRI clear. Stay on taxotere.

Thank you Sue for all you do, you are making a difference and that means so much.
Peace, Janet

_________________
Diagnosed at 47 years old - never smoked
3 amazing children, now 27, 25, and 24
Married 30 years

12/22/06 Diagnosed NSCLC Stage IV - Adnocarcinoma
Tumor in Rt Lung, 3 on Spine, one on the Pons of the brain
Radiation to the spine
Fractionated Linac Stereotactic Radiotherapy to the Pons of the brain

2/15/07 Start Tarceva 150 mg
4 1/2 years of "no progression of disease"

4/11/11 New mets on brain, Gamma Knife Radiation
Probable Leptomeningeal Disease.
Start "pulsing Tarceva" 1500mg 1xweek

7/11 - Brain mets swelling as an after effect of Gamma Knife, put on anti seizure meds, steroids.
New mets on spine and lung - watching.

9/11 - No new growth in Brain - more growth on spine and ribs. Back to Tarceva 100mg daily, adding Avastin every 3 weeks.

12/11 - Scans show no new growth, some mets stable, others have shrunk!

12/22/11 - 5 year survivor!!!!!

7/20/12 - scans show new growth in lungs and spine. Staying on Tarceva and Avastin and adding Alimta and Carboplatin.

10/12 Taken off Alimta and Carboplatin due to extreme side effects, continuing on Tarceva and Avastin - scans stable

Winter/13. Scans show growth again. Bones, lungs, lymph nodes, spleen. Time to look into clinical trials

4/13. Started clinical trial at Yale AP26113 by ARIAD, a "second generation Tarceva", side effects so far, diarrhea and nausea.

My story - http://lungevity.org/l_community/viewtopic.php?f=47&t=46162