BridgetO

Most days, the cancer is buried somewhere in my thoughts, my work, my hobbies - not at the surface.  But there are days when it hits me right between the eyes.  Cancer.  How the hell did I get here? Is this really my life?  
Wondering if anyone else has experienced this.

“I’m sorry, sweetheart these are tumors in your lungs and a form of lung cancer”.
These were the words spoken to a vibrant, healthy 36-year-old female on October 19, 2017, by the thoracic surgeon. I knew that things were probably not good when he came in and asked if I was alone. Unfortunately, I was alone. Looking back, that day seems like a blur. I remember the ladies at the checkout desk asking how I was doing as they ask so many patients all day long. It’s mere customer service, right? I never made eye contact and mustered enough energy to say the word “fine”. I was far from fine, but I just wanted to get out of there.
I never cried in the doctor’s office that day, but walking down that winding hallway and through the parking lot felt like I was carrying cinder blocks for shoes around my feet. The minute I got in my car and closed the door was the moment that I completely lost myself. I have cancer. I am going to die. My parents are going to have to bury their only child. My world felt like it had crashed.
The days and weeks ahead were just amazing considering my new circumstances. People loved on me like I had never been loved on before. I received cards and texts and all sorts of support, but a part of me wanted to tell them that I was still the same person and I appreciated the cards of support, but that I wasn’t dead yet. Please hold the flowers too.
My lung cancer diagnosis was a complete shock as it is to so many. However, I was asymptomatic and cancer was the last thing on my brain. I was hospitalized for a Bartholin Cyst. I had my yearly exam already scheduled with my OB/GYN and this exam was far from routine. I explained to the nurse that I was in pain and was running temperatures between 101-103⁰. I visited the local emergency room twice to attempt to acquire some relief and was incorrectly diagnosed. My OB/GYN admitted me to get antibiotics started quickly and mentioned a minor surgery, but before I went to the hospital, he wanted me to have a CT of my abdomen to identify the cyst prior to any procedure.
Thankfully, the tech caught just the lower portion of my lungs on that scan and the radiologist noted lung nodules.  When I went back to my OB/GYN for my check up, he mentioned the lung nodules and ordered a full chest scan. He informed me that people had benign nodules and they could be there from my severe infection, but that he wanted to just make sure that it wasn’t anything.
The next day he called me to inform that the nodules were still there and he would like for me to see a Pulmonary Specialist.  I agreed and the Pulmonary Specialist was very concerned about the number of nodules in my lungs which were over 100 scattered across both lungs. He conducted a bronchoscope and a needle biopsy for which both were non-diagnostic and I was then punted to the Thoracic Surgeon. The Thoracic Surgeon removed three wedge sections and sent the pathology off to Mayo Clinic in Arizona.
After further molecular testing, my oncologist educated me on the different mutations and the path of treatment that would be taken for each of them. It was determined that I was Stage IV due to both lungs being involved and was positive for T790M. I began Tagrisso as a first line on November 11, 2017. After 6 months on this drug, my last scans read “barely perceptible”. I will keep taking Tagrisso until resistance occurs and hopefully there will be another inhibitor to take its place.
When I was first diagnosed, I would literally wake up in the night in a panic. I couldn’t sleep, eat or function normally. I started browsing the internet for support groups and pages as well as social media. I found the LUNGevity private patient groups on Facebook and asked to be added to every single one of them. I began telling my story and people started responding to me and sharing their stories. Strangers were sending me encouraging private messages. I saw people living and thriving with an incurable, life-shortening disease. I found hope. I started sleeping and not crying so much. Finding those support groups really made the initial journey a bit easier.  Although we were strangers, we were brought together by a common bond. I’ve since been able to meet some of those people in person through the HOPE Summit and my “family” has grown by leaps and bounds. I would have never met these incredible people without lung cancer.
Receiving a lung cancer diagnosis is not something any of us would have willingly signed up for, but I am thankful that I was able to find out before it spread all over my body and treatment options were expunged. I am also thankful for the perspective shift. I now know what it means to live each day with intent. The days of merely existing are over. It’s time to live and love life to the fullest because I now understand the value of each day that I am given.
 
 
 

For the past 11 years, I’ve helped treat lung cancer patients as an RN in a cardiothoracic practice. Then last October, I developed a bad cough that lasted over a month. It was cold season, and my co-workers and I thought it might be pneumonia or even bronchitis. No one suspected it could be lung cancer, since I’m a nonsmoker and haven’t been exposed to common risk factors like asbestos, radon, or pollution.
I had a chest ray taken, which showed fluid around my right lung. The tests of the fluid didn’t uncover anything extraordinary. I didn’t look sick, but I felt fatigued and at times, I had difficulty breathing. A few days later, I had a CT scan, which supported the pneumonia diagnosis, but it also showed a thickening on my chest wall.
The doctors drained the fluid and tested it twice. Both times, the results came back negative for cancer cells. This didn’t completely rule out the possibility, but it gave us reasons to be hopeful. I started taking antibiotics and steroids, which were prescribed by a pulmonologist. But the second CT scan did not show any improvement.
My first surgery was scheduled for late January. The doctors thought I had an infection and that they’d be able to clean it out. But during surgery, they discovered growths in my lung that had expanded into my chest wall. The hospital lab confirmed that it was lung cancer.
My boss, cardiothoracic surgeon Carmine Frumiento, and my colleague, Danielle George, a longtime friend and physician assistant who I work with every day, had to give me, my husband, and my family the heartbreaking news that I have advanced lung cancer. It sounded so surreal that at first, I thought I was dreaming. I have a 6-year old daughter and a 2-year old son.
All of the sudden, I went from being a care provider to being a patient. I had the surgery, and then later that week, I traveled to Massachusetts General Hospital to meet with some of the best specialists in the country. Danielle traveled to Boston with me and my husband, Chris. Before we left, Danielle and Dr. Frumiento helped us prepare a list of questions to ask the doctors at Mass. General.
The doctors at MGH recommended starting a new targeted therapy without chemo or radiation. The results have been very promising on patients with my genetic mutation. But since the medication is so new, my insurance would not pay for it unless I tried an older treatment first. In order for her insurance to approve the new treatment, I would have to progress on the old treatment, or suffer from intolerable side effects. It felt like I was on an emotional roller-coaster. Fortunately, my colleagues helped me appeal the insurance company’s decision, and we won.
I still work as a nurse, but I’ve cut down to just mornings, since I get very tired by the afternoon. I’m very grateful for the support of my work friends, who have become like extended family. They’ve helped to make sure I’m getting the best care. I realize that not all patients have those strong connections, and how important it is to advocate for yourself.
I’ve been fortunate to have incredible support from my family, friends, and community. They’ve helped with everything from meals to child care to raising funds to help pay for my medical expenses. And my family was selected as the beneficiary of the Celebration of Courage Co-ed Hockey Tournament earlier this month. My husband has played in the tournament for many years to help support and raise funds for families affected by cancer. Now, our family is affected by cancer.
It is likely that my cancer will never go away, but I have been told that the genetic mutation cannot be passed down to my children. The goal is to turn my cancer into a manageable chronic disease that I can live with until better treatments are available.
I hope my story will raise awareness that lung cancer can happen to anyone, even young nonsmokers. It’s a fact I never fully realized myself, until I was diagnosed. There is so much blame and stigma surrounding lung cancer. I want to help raise awareness about the resources that are available for anyone who is diagnosed.
 

“Drug-related deaths have grown to be a major US public health problem over the last two decades.  Between 2006 and 2015 there were more than 515,000 deaths from drug overdoses.…” This from a March 26 article in Science Magazine. The death rate averages 5,722 per year over the cited period.  Further, “the drug epidemic is a pressing concern among policymakers.” This concern translates to a $865 million research budget for the National Institute on Drug Abuse. This budget funds $151,117 per individual drug-related death.
This year, 163,199 Americans are projected to die from lung cancer. The National Institute of Health Lung Cancer research budget for 2018 is $282 million.  This level of research amounts to only $1,727 per individual death. 
Lung cancer kills 28 times more people per year than drug addition, but the drug addiction research budget is 87 times larger then lung cancer’s on a per-death basis.  Clearly, our public health policy makers fail to understand the meaning of the word major.  The major and largely unaddressed US public health problem is death from lung cancer.
Stay the course.

Today, I happily paint two of my toes red, to celebrate two years of being a survivor.  Some days I ask myself it has really only been 2 years because it feels like I got the diagnosis so long ago.  Lots of scans and needles and chemo and radiation and....I'm still here!  
I woke up this morning, very cheerful, almost like I was celebrating a birthday.  I realize that EVERY SINGLE DAY is a gift, whether we have lung cancer or not, but that cancer seems to make each day that much more important.  While I was thinking about everything today, I was overcome with emotion.  I know that I am blessed to have as much time as I've had.  I think about the friends I've made in this "club" that are no longer here.  For those friends, and for the rest of us, we continue to choose life.  

In December 2016, I started experiencing a lot of shoulder pain and then back pain leading to shortness of breath.  I went in for an X-ray and MRI, and was told I had pneumonia. I knew that wasn’t correct because I hadn’t been sick enough to get pneumonia.  I spoke to my doctor and insisted on being seen again right away. I was sent to the hospital to have a CT scan, which showed fluid in the lining of my lungs. I had the fluid tapped for testing and it was bloody. I was referred to a thoracic surgeon and underwent surgery to have the fluid drained in March of 2017.  During surgery they did a scope to look around and found and removed a cancerous mass.  I was diagnosed with Stage IV adenocarcinoma lung cancer. 
I was in the hospital for five days. When I got out on a Friday, I met with my oncologist. They decided to test the mass for genetic mutations. My oncologist called me at home to share the results. I was expecting bad news, but she said she had good news. Genetic testing showed that my cancer was caused by the ALK gene mutation. She told me that having a genetic mutation was like winning the lung cancer lottery because there were very effective treatment options.
At the time, Alcensa was still a second-line treatment, but my oncologist and I pushed for me to be able to start taking the drug. It was so new that I was one of the first patients at my hospital to start taking it. Just a few weeks after I started taking Alcensa, it was approved as a first-line treatment.
I have some physical challenges that impact me.  Some of them are shortness of breath, muscle pain and fatigue.  I have nerve pain from my thoracic surgery as well.  I am also dealing with mental challenges.  I am working fulltime however, I struggle with memory loss, focus and vision issues, all of which are side effects of my treatment.  I also deal with some depression.  I explain it to family members as mental torture.  You try to enjoy living but, you are always aware that your life can be cut short at anytime.  The cancer consumes your thoughts 24/7.  That is really hard.
I recently became a member of the ALK Positive Facebook group, which led me to LUNGevity Foundation.  ALK Positive has partnered with LUNGevity for a research grant for our cause.  It’s a great partnership. I wish I would have known about LUNGevity and the ALK Positive online support group right away. LUNGevity really advocates for patients.  They are such a great source for support and information. I noted that they share survivor stories and I immediately decided that I wanted to share my story with others.  The more we talk about lung cancer, the more others learn and we can get rid of the stigma.  Putting faces to this disease makes a real impact.
I would tell a newly diagnosed patient to reach out to support organizations like LUNGevity.  Knowledge is power and there is hope.  The more you know about this disease and advocate for yourself the better off you will be.  It’s a scary road but a little easier when you find good support sources. 
Survivorship means I am living with this disease.   I hope to keep living with this disease for many years and provide support and advocate for others.  I do not want to sit and wait, I want to take action to help myself and others as much as possible.  We need to fight for more research funding and to make others aware of this disease.
I hope to touch others with lung cancer and inspire them to share their story and find their voice to advocate.  I want to get the word out about ALK lung cancer and remove that stigma that it’s a smokers’ disease.  Whether you smoked or not doesn’t matter. If you have lungs, you can get lung cancer.   I hope that as others find their voices too, we can get the word out about how we lack sufficient funding for research.  That is really important to me.  433 people die each day of lung cancer – we have to change this!
 
 
 

The other day, in conversation with a newly minted medical school graduate, he told me low-dose computed tomography (LDCT) was dangerous. Dangerous! If LDCT is dangerous, what is late discovery of lung cancer? He nearly fainted when I told him I had perhaps more than 40 CT scans in my treatment history, telling me I was a candidate for radiation induced cancer. It didn’t seem to register that I was a candidate for extinction by lung cancer.
We are told the only effective way of treating our disease is early discovery. Few dispute this point. Why then would the Center for Medicare & Medicaid Services (CMS) want to reduce reimbursement for low-dose computed tomography (LDCT) screening by more than 40 percent? The Society of Thoracic Surgeons is concerned calling LDCT a “game changer in the battle against lung cancer.”
Then I read: “Family physicians lack sufficient knowledge about recommendations for LDCT." Moreover, Doctors Patz and Chen, professors of radiology at Duke, say: “Not screening patients annually could save millions in health care costs and spare patients the radiation exposure and downstream effects of false positive screenings.” Something is very wrong. We have an effective tool for early discovery of life-threatening disease when not discovered early, and there is a campaign mounted against using it.
CMS is a federal government-funded agency. In government programs there is a big difference between savings (cash you can put in the bank) and avoidance (cash spent elsewhere). CMS money is appropriated in broad categories. Once appropriated, fiscal managers move money around to address other needs or requirements. Appropriated federal funds are almost never returned to the Treasury. So the reduced funding for LDCT will be a bill payer for some other CMS program. No money is saved; it is spent on something else.
Further, when making a valid cost avoidance argument, one must identify all cost. For example, the professors of radiology predicting savings for reduced screening do not identify the millions of dollars of increased cost for treating late-stage-diagnosed lung cancer. A cost avoided almost always results in cost added somewhere else, and without disclosing added burden, professionals are making very unprofessional arguments.
Lastly, and most importantly, no one advocating reducing LDCT is considering the most important impact—suffering. There is a vast amount with late-stage diagnosis. Suffering affects more than the lung cancer survivor; it devastates families. While real and detrimental, suffering defies quantification in dollars. Several hundreds-of-thousands of us in the United States will suffer a late-stage lung cancer diagnosis this year. LDCT can eliminate some of this.
In this light, it is hard to understand the assault against using LDCT to find, fix, and finish lung cancer!
Stay the course.

Today, in the United States, we celebrate the holiday of Thanksgiving.  Our first president, George Washington, called for an official “day of public thanksgiving and prayer” in 1789 and although the Congress heartily agreed, the proclamation was lost in the bureaucratic press of politics.  It fell to Abraham Lincoln to rekindle the Thanksgiving Holiday shortly after the pivotal battle of our Civil War—Gettysburg in 1863.  Thus in the mist of warfare and uncertainty, a holiday dedicated to thankfulness was founded.  
Today, we gather to celebrate life and thank the Almighty for health and bounty.  Thankfulness for me, a lung cancer survivor, is particularly significant for I have been blessed to witness one of life’s most memorable events: birth of a first grandchild.
During my recent visit, while cradling her in my arms, I felt a connection with my infant-offspring.  As the picture captures, Charlett Emilyrose was looking intently into my eyes, unusual for a three-week old baby.  She held my gaze for the longest time as if painting a mental portrait.  Her grandfather was joyous and delighted and thankful. 
This touching moment is unfortunately rare for those with lung cancer.  By statistical expression, Thanksgiving 2005 should have been my last celebration.  Yet, nearing my 13th year of surviving a lung cancer diagnosis, I am so thankful to have witnessed the birth of a grandchild. Providence has indeed showered me with gifts.
So today I give thanks for survival and in the spirit of George Washington’s original scope of holiday, I pray all who suffer the effects of this horrid disease experience the joy and delight I felt as I held my granddaughter in my arms.  Happy Thanksgiving all.
Stay the course.

I am writing this from the pool deck of a cruise ship while on a transatlantic sojourn. Our fourth transatlantic and our favorite form of vacation, we cross then pick several countries and explore. This year, after docking at Barcelona, we fly to Ireland and tour the wild and unpopulated western coast, then spend a long weekend in Edinburgh, and fly home. The cruise and the touring after is wonderful. The flight back is a nightmare because my incision scars throb in pain in a pressurized aircraft. We need to make the return flight in two legs (overnighting in Boston) to recover from the pain. 
The national hope summit concluded, and missed for the second time because of our annual spring migrations, I tell you about our cruise as two examples of hope.
First, we undergo treatment and endure discomfort for a reason -- extended life. It is important to shelve the treatment and uncertainty mantle to do something enjoyable with this life extension. We enjoy these long (and reasonably priced) repositioning journeys on a cruise ship.  We step out of the mundane and into the lap of luxury and enjoy interactions with the international assortment of passengers we sail with. 
Second, to the essence of hope, if I can survive to do this, so can you.  
I will never go back to my lifestyle before lung cancer. But, I can have an enjoyable and meaningful life after lung cancer. And, my attitude dictates the amount of joy and meaning experienced. It is so important to realize this point. We endure treatments for a reason. Find your reason. Revel in your new normal. 
Life indeed is what you make it. Make yours. 
Stay the course. 
Tom

Perhaps you’ve heard?  The federal government is a large insurance business with a standing army.  Social Security is insurance — a specific kind of insurance called an annuity.  The insured and employer pay premiums every month to fund a defined benefit at a specified year (normally your federally mandated retirement year).  Everything is peachy-keen till a disability affects work because one has late stage lung cancer.  And, when a lung cancer survivor files for disability, allowed by law and regulation, the federal government almost always disapproves.  So, here are some suggestions for obtaining disability benefits by disapproval.
1. Expect to be Disapproved. I know a lot of folks with lung cancer.  Among this population, only one was approved on initial application.  He passed before he received his first benefit check.  My company provided disability insurance carrier filed my first application.  I had an unresolved bronchopleural fistula after a pneumonectomy that required a second and third surgery and indications of tumors metastasized to my remaining lung.  My claim, filed by a former Social Security claims adjuster, was disapproved.
2. Involve Your Doctors.  The disability application requires you to disclose all your physicians and medical providers.  Then, the administration asks for medical records, reports and observations. Doctors are busy folks; oncologists are bombarded by SSA requests for information, and for good reason.  Late-stage lung cancer (including treatment and side-effects) is often disabling.  Inform your medical providers of your application and ask them to help by responding to the request for information.
3. Complete the Application. The Social Security Administration is a bureaucracy.  Bureaucracies love to find “nits” in applications and return with some very vague description of the problem. This delays a decision and delays payment, and these are typical insurance company behaviors. Read every word of the disability application process (it is all online at www.ssa.gov) and check your application closely to ensure it is complete and error free.  Have several family members check it also after reading the application instructions. Ensure you completely describe your symptoms including those caused by side-effects.  Also, completely describe how these symptoms affect your ability to stand, sit, walk, bend over, think, concentrate, and etc. (Hint - read the criteria that will be used to determine your disability finding and use those words as descriptors).
4. Understand the Fine Print. There is payment delay: six full months after the date of disability (date shown on claim approval letter). Depending on other income sources, payments may be taxable. You are not found to be permanently disabled.  Regulations allow a review of your status after start of disability payments. It is not a good idea to join an adult softball team while receiving disability payments! You are not eligible for Medicare until 24 months after receipt of first disability payment. Your disability payment will be less than your full retirement benefit, and when you reach retirement age, your retirement benefit will not be increased. 
5. Lawyering Up. Filing the initial disability application online is a good idea, as long as it is properly completed and supported by doctor reports and observations.  But when denied, it is time to level the playing field and retain a lawyer. Not any lawyer, but a law practice that specializes in Social Security Disability appeals.  By law, they cannot charge you for their services.  They collect fees directly from the Administration if an administrative law judge approves your appeal.  And, most important, they know what they are doing and it is in their financial interest to do a good job on your appeal!
The disability process is deliberate, lengthy and frustrating. Like lung cancer, success involves persistence. Insurance companies don’t relish paying claims and every approved disability claim turns a premium into a disbursement.  But, Social Security is insurance with disability payment provisions that you pay for!  If you can’t work, apply, appeal and persist!  
Stay the course.

Just reported is a Memorial Sloan Kettering Cancer Center and Cornell University study showing but 5% of terminally ill cancer patients understand the gravity of their disease and prognosis. Moreover, only 23 percent of these had a discussion about life expectancy with their doctor.
At first pass, I questioned the validity of the percentages.  They were so low they bordered on unbelievable. This had to be mainstream press sensationalism at work! Then I spoke with an expert, and she convinced me I was not a typical lung cancer patient. The fact that I read about my disease after diagnosis was a big tell. Many do not.
My education about lung cancer started the first night of my diagnostic hospital stay. The lesson delivered ⎯ a very pragmatic and frank discussion with my general practitioner. His words characterizing my prognosis were "slim odds." He didn't want me to give up but wanted to ensure I knew the enemy.
After discharge from my diagnosis hospital admission, I burned up the Google Search Engine reading everything I could about lung cancer. In 2004 there were not a lot of sources, but there were enough to scare the living daylights out of me.  Research revealed a very low probability of living 5 years even with effective treatment. My bravery evaporated.
My wife recalls that time. She reminded that my inquisitive nature departed with bravery. Martha asked questions. These explored diagnosis, treatment possibilities, and prognosis. I mostly stared at the clock in the consultation room. Or tried to change the subject.
My oncologist was frank. He said even with successful surgery, I had high odds of reoccurrence. When tumors appeared after pneumonectomy, he was down to chemotherapy to combat my lung cancer. Chemotherapy would buy time but it wouldn’t eradicate. Time purchased allowed for CyberKnife technology to emerge that was a surer kill. But treatment opportunities were explored because Martha was persistent. After a year of surgical mayhem and two years of Taxol Carboplatin hardened with Tarceva, I was barely along for the ride.
Sure, I knew my prognosis and life expectancy probability but knowledge did not empower me; it empowered Martha. So maybe the study numbers are low because patients understand their dire straits. Maybe we know and are afraid to talk about it.
In case you are wondering, lung cancer is deadly. Mostly because it displays few symptoms and is often diagnosed at late stage. The treatment tool kit for late stage lung cancer is largely empty. Why? Now that is a good question; one deserving of academic study. I’ll start.
Let’s hypothesize that lung cancer is a self-induced disease ⎯ people give it to themselves. If this is true, why should society invest in new diagnostic or curative means? As a logical extension of the hypothesis, society should never invest in curing maladies that are self-induced. How is taxpayer funded research for HIV/AIDS by the National Institute of Health to the tune of $3 billion a year explained? It is self-induced. Some will assert that a proportion of HIV/AIDS patients get the affliction accidentally. Yes, and some proportion of lung cancer patients are never smokers. But, drug abuse is completely self-induced and it garners just over $1 billion in yearly research. In the same data year, lung cancer was allocated but $225 million. No research for self-induced hypothesis fails.
Let’s construct another hypothesis: society funds diagnostic and curative research for diseases that kill the most people. Seems reasonable. Scarce resources ought to flow to afflictions that take the most lives. Let’s examine the data. In 2012, HIV/AIDS claimed 12,963 deaths according to the Center for Disease Control (CDC). In that same year, lung cancer killed 157,425!
Drug abuse is now anointed our national pandemic. Indeed prescription opioid overdose is “raging through the country.” CDC drug overdose deaths amounted to 38,538 in 2014 but in that year lung cancer deaths were 158,080. Lung cancer is our pandemic. It has been for a long time. The more-deaths-the-more-funding hypothesis is toast!
Frankly, I’m getting tired of the medical research community squandering precious dollars studying what cancer patients think, feel, or understand. What is far more relevant is how to find, fix, and finish lung cancer.
Stay the course.