Monthly Archives: November 2012

Nancy

Yet another guest post from INSPIRE, Nancy also urges others to be their own health care advocates and to not shy away from second opinions:

DSCN0658My name is Nancy. I am 55 years old. I have always lead an active life. And…I still do! I enjoy golfing, reading, reality TV, classic rock, and keeping my pet rats, (I have 6), loving cats, listening to my beautiful red factor canary sing, and working full time as a perioperative assistant for the OR in a busy hospital.

My nightmare began over 6 years ago. I got very sick and ended up in the hospital with pneumonia. I ran a high fever, and was extremely ill. The ER doc told me after a CT scan, that there was a spot on my lung. They did not quite know what it was, so they put me in isolation to rule out TB., which I tested negative for. I was taken out of isolation and before I went home, I asked my family doctor if I should get a lung biopsy, did I have cancer? I was told, no, it was only a pus pocket. I took his word that I was OK, and went back to my life. I forgot about it. Time went by, and I became a pretty healthy woman again.

Then, two summers ago, I became ill with bronchitis. I was treated with numerous antibiotics and it kept coming back. To my shock and horror, a random x-ray found a mass in my right lower lung. I was totally blindsided when I found out the mass was in the exact same area as the spot from 6 years earlier. I was diagnosed with NSCLC adenocarcinoma on September 27, 2011. The same day of my biopsy, I went to the family doctor who misdiagnosed me. He asked me how I was. I told him “not too bad considering I just had a lung biopsy”. Then I let him have it with both barrels…needless to say, he is no longer my doctor!

I had my right lower lobe removed via VATS on October 23, 2011. I am stage 1B. I began 4 rounds of cisplatin-alimta in January, 2012 and finished in March of 2012. I went back to work that April. While I was home during my treatment, I set goals for myself. I was determined to go back to work and not let cancer take over my life. I admit to having scanxiety during scan times…but, I just had my latest scan and I am NED (no evidence of  disease) and have been for 13 months now. Happy dance!

I am a non-smoker. But, I was working in bowling alleys for over 20 years when I was younger and breathed in secondhand cigarette smoke. Did this cause my illness? I think it is a big part of what happened to me, along with the fact that I live in an industrial area, near several auto plants in a suburb of Detroit. Cancer also runs in my family, so it may be genetics.

I take life day by day and know that every day is a gift. I do not really believe that cancer happens for a reason. I feel that part of it is just plain old lousy luck. But I can say, I have begun some wonderful friendships since I was diagnosed. I have done things I would have never thought I would have done including learning to draw blood and also changing jobs completely. No one in my new department knows that I have lung cancer. I am keeping a huge secret, but I am also giving myself a chance to be just one of them and to just be ME. No one to feel sorry for me, no one to look at me and think she has IT. I say never ever give up, fight with everything you have…Be strong, stay busy and focus on your life.. And, most of all, be your own health advocate. Never, ever blindly trust something a doctor says. Get copies of your records, and get other opinions.

Nancy

Alta

Alta, yet another of my INSPIRE friends, speaks of the importance of listening to one’s body. A delayed diagnosis is a common scenario in lung cancer, and for never smokers, tell tale symptoms such as a chronic cough are generally attributed to benign causes. Alta urges everyone to become their own advocate:

When complete silence surrounds me I detect a humming sound coming out of my chest cavity. This reassuring high pitch wheezing is a constant reminder that my lungs are still functioning. They started this musical whistling duet about two and a half years ago. From time to time the palpitation of my pounding heartbeat merges with the duo, which adds tempo to my organ’s musical talent. We are all guilty of forgetting how vital our lung function is; then the silence of their fine tuning gets damaged and we remember. A noisy interruption in their muted function is similar to the loud sound a siren makes announcing the arrival of a dangerous storm. We then have the choice to either cover our ears until the warning goes away or do something about it immediately. A simple examination by a doctor will frequently but not always help you distinguish whether you have a minor case of bronchitis or something more serious. Lung disease does not discriminate; no one is spared from any respiratory endangerment; even those who do not smoke or have never smoked.

For quite a few years I chose to ignore the warning signs and as long as it didn’t stop me from enjoying my early morning runs; why worry? With time the elusive little cough had all grown up and began to rudely interrupt my discussions and to slow down my exercise routine. Neglecting what is important in life isn’t a trait I have in my personality. I rarely ever missed my annual medical exam and in spite of my children’s occasional disappointments; I always prepared wholesome meals. Nonetheless, I was so busy caring for my family’s welfare that my own sometimes went unnoticed. Cigarettes never tempted me and I have always been diligent in maintaining a healthy existence. There was no plausible reason for my doctor to suspect that my tenacious cough was life threatening; subsequently, I was misdiagnosed from 2007 until 2010, when I finally demanded a chest x-ray.

After the Pulmonary Specialist read my questionable chest x-ray; he immediately asked me to have a Thoracic CT scan done which was followed by a PET scan: Per the Specialist’s request Tom and I went to see him the day after the PET scan was done. The doctor sat down directly across where I was sitting, took a glance at my husband Tom, look at me and said with a soft stern voice:

“Alta, you have lung cancer.”

The sound of the warning siren was so loud I became deaf to every word that was said after that.

I was referred to a Thoracic Surgeon and on August 19, 2010, at 8:00 in the morning the surgery was scheduled. I had a Thoracotomy/Lobectomy of my upper right lung and during the surgery the doctor had no choice but to break and spread two of my ribs. I have a concave shaped rib cage; “concave” meaning it turns inward versus turning outward; which made the surgery a complicated one. Nearly three hours later a two centimeter Bronchioloalveolar Carcinoma Non-Small Cell lung tumor was removed along with my whole upper right lobe. The lymph nodes surrounding the cancer area were taken out as well, which was a good thing because a minimum of A-typical (pre-cancerous) cells were found after the biopsy.

The day of my surgery I woke up lying on a hospital bed in the ICU; two plastic draining tubes were protruding out of my operated rib cage; an intravenous needle was inserted and taped on top of my right hand administering morphine and another needle was located in the fold on my left arm providing antibiotics. A lumbar epidural catheter was embedded near my spinal cord between the shoulder blades injecting an anesthesia from a plastic pouch. Two more small plastic tubes were placed in my nostrils passing oxygen through my lungs. I swallowed a powerful pain killer every three hours and even though all these precautions were taken; unless I was knocked out with a sleeping agent, I still felt an excruciating pain racing through my body. This physical state lasted for seven days and eight nights. At the end of my hospital stay and still paralyzed with pain; I felt a thin stream of tears flowing down my cheeks and I thought, “I should have had a chest x-ray sooner. Why didn’t I get an x-ray?” I don’t know if my life has been extended by the painful trials I’ve been through: I just wish I had listened to all the warning signs my “subtle little cough” was revealing more attentively.

Please broadcast the importance of an early chest x-ray screening. It takes very little time and who knows; it may spare you from years of physical trauma and a lifetime of worries.

Alta

A gentleman known as stageIVsurvivor

This particular guest post is actually the distillation of a telephone conversation that I had with my friend known by our online community as stageIVsurvivor, but more informally as G. When I became part of the INSPIRE community four and a half years ago, G was already a well established member, and practically a legend.

Diagnosed on November 30th, 1999, G’s lung cancer had metastasized to his brain. Nonetheless, his oncologist was confident that his cancer could be cured and remarkably, after a combination of surgery, chemo and gamma knife, G has been out of treatment and cancer free since November of 2000.

Prior to his diagnosis of lung cancer, G smoked. And he still does.

I will be the first to admit that I have had some trouble with this fact, as it flies in the face of all reason. Forget stigma for a moment; it just seems like a good idea to stop smoking if you have lung cancer. However, I am also adamant that one of the best ways to combat stigma is for smokers and former smokers to stand tall and refuse to be bullied or shamed into believing that they somehow deserve a diagnosis of lung cancer. No one deserves this or any other disease, and I was pleased when G agreed to share his story.

After our conversation, I came away with a much greater understanding of who this complicated individual is. Certainly, as a long term survivor of stage IV lung cancer, he provides incredible inspiration. In our forum, he often injects a dose of humor. Occasionally he can come across as a real curmudgeon, and G and I have had a dust-up or two. However, if you were to ask many of those he has helped behind the scenes, they would describe a generous and caring individual.

I was curious as to why someone who had not been in treatment for 12 years would be drawn to a support group for lung cancer survivors.  “I’m just one of the very, very lucky ones…it is my responsibility to do what I can for other people.” G emphasizes that his continued “participation on Inspire is only to help those still suffering and their families“.

Crediting an amazing medical team for his successful treatment, G is on a personal crusade to educate others about the importance of “proper treatment, proper direction and proper insight“. He abhors complacency, and often urges patients to seek a second opinion.

As for his own unconventional approach to survival, G is blunt. First, about the fact that he initially faced his diagnosis with anything but optimism. “I was angry and had a horrible attitude“. Unfortunately, G also ended up addicted to pain medication, and at one point just wanted to give up. However, he experienced a moment of clarity, realizing that he ‘wasn’t dead yet‘. Even while “lamenting the fact that I wouldn’t be around to raise my sons” G acknowledged that he “wasn’t doing a good job then“. He went into rehab and beat his addiction to the pain meds.

And so why does G still smoke? Certainly, there was a sense of “the horses are already out of the barn“–the damage done. But it would seem that the real reason is that having beaten both drugs and alcohol (G acknowledges that he has an addictive personality), he has found nicotine that much more difficult to kick. He’s giving e-cigarettes a try, and if they don’t do the trick, he may try something like chantix. Of course, given his personal stuggle with addiction, he is leary of any chemical intervention.

At any rate, on November 30th, G will mark his 13th year of surviving stage IV lung cancer. He’s a very lucky man, and he knows it.

Tim

Today’s guest post is from Cindy. This was her first Thanksgiving since Tim’s passing, and she found writing about him quite emotional but also cathartic. Interestingly, Tim also had an ALK mutation, an uncommon occurrence in someone with SCLC.

My husband, Tim, died from non-small cell lung cancer April 27, 2102 after a two and ½ year battle; he was 51 years old. In April of 2009 he had a complete physical and received a clean bill of health. In June he started feeling run down and had a nagging cough. He went to the doctor. Mind you this is about the 6th time I had seen him go to the doctor in the 25 years we had been together. They x-rayed and gave him steroids. He felt better with the steroids, but the cough and fatigue returned after the doses ended. He was also noticing that the eye sight was getting worse in one eye. He went to an eye doctor who immediately sent him to a specialist. The first diagnosis was ocular melanoma, not to be confused with skin cancer. We were terrified, but had a clear plan. After a standard PET scan to be sure it had not spread, they would radiate the cancer with a small puck behind his eye. Done. We even consulted with the radiologist and were getting ready to schedule the appointment. We received a call from the radiologist saying they saw something on the scan. Apparently it had spread. They did not think it was ocular melanoma anymore. Next step, biopsy. Of course we all know the answer to the biopsy question. Prognosis was about 16 months. As terrified as we were with the ocular melanoma diagnosis, at that point I would have given anything to go back to that point.

I will say that Tim (and I) smoked for many years. We quit when Tim turned 40 and he was diagnosed with lung cancer at 48. We have two teenage children who lived through this with us. They are caring and compassionate children and this experience has made them more so. When he was diagnosed Tim asked them to please, for him, don’t turn to drugs or alcohol to drown their sorrows. He asked them to live their life to the very fullest, if not in spite of this, because of this. We vowed to spend as much time together as a family as we could and started planning many, many wonderful vacations and events for the 4 of us. We had some real fun.

After about 8 months of the normal treatments Tim’s oncologist sent us to the University of Colorado Hospital where we met Dr Ross Camidge. There our hopes were bolstered. Turns out Tim had the ALK gene and was able to start on the crizotinib trial. What a miracle. He was feeling great, the cancer was gone. We were having a blast! The best part of that lasted about 8 months. The cancer then found its way to his brain. Whole brain radiation followed and then some progression of the cancer in his liver. The end of May 2011, right after a high school graduation cruise for our daughter, he was removed from the trial. The next 9 months were up and down. There were new trials and new trial failures. There was more radiation and then finally, nothing they could do. He held on so tight and tried as hard as he could. I know he was so very worried about his family, but when they told him there was nothing else to do, he was able to let go. His passing was quiet and beautiful with me, our kids and our dogs there to help him go.

Tim will be remembered for his great sense of humor and positive outlook on life. He always had something good to say to the doctors and staff and was always trying to make them laugh, even when they were telling him bad news. He rarely complained and tried his hardest to participate in everything up until the day he passed. Heck, he worked almost every day until about 2 weeks before he went. He was a good man and my best friend and, smoker or not, he did not deserve to have to leave us so soon.

Sean

Sean, yet another INSPIRE friend, was diagnosed with lung cancer on the 23rd of December in 2009. Now 48, He divides his time between New York City and Westhampton. The father of two beautiful children, Sean realized he was gay after fifteen years of marriage. In Sean’s own words:  “I did not want to live a hypocritical life so I decided that my wife and I should split up. I wanted my children to know what it means to be true to oneself. My kids accept me for who I am.” 

Sean goes on to explain that in order for him to retain his medical benefits, he and his wife remain legally married. The kids spend equal amounts of time with both of their parents, who remain committed to an open, loving and supportive family. Says Sean, “Almost five years later we are still almost best friends. We talk about boys together and ask how we are each doing.

Sean goes on to say, “Living with cancer is very challenging but I can actually say these have been some of the best years of my life. Love is what got me through–I have an amazing beautiful partner who cared for me and my kids with exquisite kindness and a web of friends that held me up. I quit work and now focus on my family and me. I have become the parent I never was when I was working sometimes seven days a week. I planned weddings for a living. Each wedding’s budget was anywhere from 250k to 1.5 million. I have a little less money but who cares. Living life is more important. I live my life saying I had cancer and if and when it might come back I will deal with it. But for now I just do not have cancer anymore.” 

Sean has approached his cancer holistically, and he counsels others living with this disease to “Stay positive, reduce stress. Treat the mind as well as the body. I always say that my oncologist treated the body while my integrated oncologist treated my mind. When I was first diagnosed I did vibrational healing, meditation, tibetan bowls, chanting…and lots of walking per the advice of my super hero surgeon, J. Sonnett.

Finally, Sean offers this simple advice: “Enjoy life to the fullest and live everyday like it is your last.

Liz and Berry

Next up from my friends on INSPIRE are some observations about the impact lung cancer has had on their lives by Liz, wife to Berry. Liz notes that post diagnosis, she and Berry, who was diagnosed with non small cell lung cancer in July 0f 2012, have only grown closer as has their faith in God.

Our faith and relationship is stronger than ever. We have begun to realize that we each are ‘only’ human and accept each other for the person we are.

Some friends and family have fallen away; having to hear about cancer is unpleasant and a reminder that no one is invincible. Every couple will be separated by death at some point and we remind people of that fact.

For the 20 months that Berry was ‘stable’ people assumed he was ‘cured’ but WE have lived in 3 month increments from scan to scan waiting for the ‘other shoe to drop’ and praying it would not. It did. In August 2012 his scan showed progression of the main tumor and a very small ‘suspicious’ area in the other lung.

Now that he is back in treatment, we are once again the unpleasant reminder to some. But thankfully we have a few friends and family who have and will always be with us in this battle. We are more than blessed. We hope and pray our faith has inspired some to seek Him.

We have been blessed with many ‘good’ days and several trips to the ER. I am still on ‘high alert’ for any symptoms of the beast gaining ground.

We have lost friends to cancer. Friends we met during treatments, friends made online while sharing our struggles. Each and every one breaks your heart a little more.

We have grown older than our years and sometimes wiser!

The grandson we are raising is in 1st grade. The tooth fairy has come back to our house after a long retirement…our other grandchildren are blooming where they are planted. A constant source of pride and joy.

We have taken a few vacations, driven many miles, seen wonderful sights, caught a lot of fish, laughed a lot and cried many tears. Prayed hard and often.

We have learned that life can be bad but living is good.

Life should be lived one day at a time.

Appreciate what you have, it might not be there in the next breath.

Trust God.

Just breathe.

God bless us all,
liz

Valerie

Next up is a guest post from another INSPIRE friend, Valerie. She shares her observations on how lung cancer can impact our personal relationships. A never smoker, Valerie has redefined the risk factors for lung cancer. Please welcome Valerie:

“I was diagnosed with NSCLC (adenocarcinoma) in Nov. of 2011 at the age of 48. As a good friend put it, I was a “sick healthy person”.

My entire right lung was removed and all adjoining lymph nodes came back clear. There was no other cancer noted in PET scan or brain MRI and I opted not to do adjuvant chemotherapy.

I’ve been married for 27 years (to the same guy!) and have two sons, ages 23 and 26. Our older son is a mechanical engineer and our younger son is in his last year of college studying music technology.

I am active, optimistic and otherwise fairly healthy. I enjoy photography, gardening, and pretty much any outdoor activity, but especially hiking and kayaking. I am an active volunteer in my church and community, primarily serving organizations that help kids. I work for a children’s multispeciality clinic where I am the intake coordinator for speech therapy services.

I guess first and foremost, I’d like to say that doctors are not God, they are human beings. They have feelings and biases just as any other human. Do not allow them to write your story; only you can do that. If a doctor is not accepting of your thinking, desires or wishes, get rid of them and find another one.

Be aware that cancer really messes with your head. One minute you will have thoughts of “I really need to have this checked out by my doctor” and the next minute you’re thinking “I’m fine, this is nothing to worry about.” One minute you will think, “I can and will survive this, I won’t let cancer win.” The next minute you’ll think, “This crap could take my life, and I don’t deserve to die this way.” These are all very normal thoughts.

Relationships will totally change…some friends and family will ignore that you have cancer, tiptoe around, avoid you or say offensive things. Don’t let that get to you; our little human brains are not wired to wrap thoughts around mortality and the possibility of suffering. Other friends and family will absolutely embrace you and be by your side through everything. Take good care of those people, and strive to keep them close to you.

Finally, I can say that each person will have their own individual journey with cancer. Some have journeys that are cut entirely too short. Others have journeys that seem to go on against all odds and no one knows why. It is a journey filled with potholes, beautiful scenery and some sticky thorns, but it is a journey that we take one step at a time.

Anyone with lungs is at risk for lung cancer. There are 6 major risk factors for lung cancer, and I had none of them, so I added a 7th risk factor, which is “Has lungs.” Never assume that someone has lung cancer because they smoked or that someone who smoked deserves lung cancer.

Thanks again,
Valerie”