My story begins in May of 2013. I am a high school special education teacher and for weeks I had a nagging but dry cough, I wasn't worried about it at all as I was running 3 miles a day, just completed a 5k road race and was very rarely sick. I finally saw my primary care physician who put me on a Z-pack and I went back to my normal life. A few weeks later since the cough had not gone away, I went back to my doctor who gave me a prescription chest x-ray, which I immediately threw on the passenger side of my car and forgot about it. Fast forward 2 weeks later, on a whim I was passing by the x-ray facility and decided to run in and get and a chest x-ray. The next day my doctor called and said he saw something on my lungs that he didn't like and was pretty sure it was cancer. A few days later a bronchoscope was done, and as I was waking up from it I heard a doctor use the word malignant and I knew he was talking about me! Never have I been so scared, I actually made them show me the name of the person on the results, thinking this is a mistake. Non-smoker, 58 year old healthy individual, never gave a thought to lung cancer. It is now 2019 and I have seen targeted therapy, chemo therapy, have had 2 surgeries. I have been on immunotherapy for 2 1/2 years, which has kept me stable. I think maybe the key to success is exercising religiously and making the body stronger for each day that follows. With exercise comes a strong mental attitude… two winning combinations!
In 2013 started with pneumonia but wasn't getting over it, Dr. wouldn't give up something just not right he kept saying. Sent me to a pulmonary specialist who found a spot on my right lung. Immediately set up oncologist, surgeon & hospital within 7 days I was laying in the recovery room with minus -one lung. Come through with flying colors, home within 3 days, thought to myself piece of cake! Yeah wrong answer, started chemo 3 weeks later and within 24 hrs I was back in hospital dehydrated & sicker than a dog! Not going to sugarcoat it the next 4 months was hell! After that I refused radiation, oncologist wasn't happy, I didn't care. As of October 20 it has been 5 years & I was stage III B so don't believe the statistics, just never give up! and fight!
I'm the guy who paints a toenail for every year I live beyond my February 4, 2004 diagnosis day. This year our toes are LUNGevity Blue to honor the foundation that is dedicated to changing outcomes for people with lung cancer through research, education and support.
There are many people who've been instrumental in my survival and making a life after; none are more important than my loving wife -- Martha Galli. If I can live, so can you!
Stay the course.
Happy Monday, my friends!
(Yeah, I know, it’s weird, I said “Happy” Monday…it’s not necessarily an oxymoron…hear me out!)
I was always the kid who enjoyed the first day of school. How about you? The first day of vacation was pretty great, too!
There is great power in “firsts.” We are almost supernaturally (or superstitiously!) drawn to the gravitas of beginnings.
I remember very clearly making a circle of hands around my mother when she began her first treatment: my dad, some close friends, the nurses at the infusion center. Some of us prayed, some of us stood silent, some of us spoke whispered encouragement. I’ve heard similar memories from many patients and caregivers. No matter the words on our lips or in our minds, the sentiment is the same: there is great awe when we begin an experience, a journey, a season.
I’ve always thought that part of the particular joy unique to a beginning is the ability to cast off any detritus from the previous experience, journey, or season. If there is baggage or fear or angst (or anything else unpleasant) that is keeping us from advancing into the new moment, the changing chapter gives us permission to leave behind whatever we do not need—whatever will not service us as we move forward.
In that way, a beginning is also a chance to reset.
A couple of careers ago, I was a professional actor. I still do the occasional play, when the schedule is calm, and I recently closed a show with my small community theatre group.
During rehearsals, when there is a problem in a scene, or a snag in a set change, there is always one perfect solution: we reset. “Reset” is shoptalk for going back to zero: we literally re-set the scene (actors AND scenery), start the scene over, fix the issue, and then move on with renewed confidence. Like a bone that breaks and heals stronger at the point of fracture, a scene that has been reset usually turns out much better and smoother than it was before.
So, I’ve been thinking lately about the significance of beginnings and resets. That brings me back to Mondays…
Mondays are the calendar’s “firsts.” For many of us, it’s the first workday after a (too-short) break. For others, it’s the first schoolday of the week. For most of us, it’s the first day we can expect business-hours productivity after the hectic rush that is (usually) Friday afternoon.
And, for all of us, it’s the loop-point of the week. It’s the marker of how we count weeks backward or forward, between commitments and appointments.
So, it’s a built-in reset. It’s a page-turner. It’s a blank slate. It’s a chance to start over: whatever didn’t get finished on Friday didn’t destroy us, and whatever has to get finished this week hasn’t yet come due.
For those reasons, I love Mondays. They’ve become my mini-reset. From Sunday night into Monday morning (I’m an incurable night owl; I’m too old now to deny it!), I find poignant peace in the tiny resets I can enact around the house. I help Monday arrive with its blank slate by creating all the blank slates I can think of: leveling off the laundry pile, clearing the kitchen counter, emptying the sink, running the dishwasher, taking out the trash, refilling toilet paper rolls, cleaning cat boxes, loading drink cans into the fridge…
You get the picture.
I cannot emphasize enough how precious that time has become to me in the years I’ve been helping my parents. I now look forward to Sunday evening, which, in itself, is life-changing. Instead of fearing Monday morning’s potential onslaught of “stuff” to deal with, I try and push last week’s dirt into the bin (or under the rug, ha!) and set the stage for the week on my own terms.
I don’t know why waking up to a sink full of Friday’s dishes on Monday morning is so soul-crushing (knowing the "why" is above my pay-grade), but it IS. It just is. At some point along the way, I learned this: I learned that the sink full of dishes represented everything that did not get “checked off” last week, and that it now stood between me and everything I needed to accomplish THIS week.
This was one of the most satisfying epiphanies I ever had, my friends, because the problem was so easy to fix.
We can’t change our circumstances, and that alone is the source of most of our stress as caregivers. There is so much about our current situations that we would change if we had the chance, but since we can’t, we need to channel that desire for control into the mountains we CAN climb.
And that laundry pile over there is just the right mountain.
“You know, I heard that green tea/apricot pits/jogging/apple cider vinegar/kale/broccoli/mustard greens/fresh avocados/yoga/this miracle powder/oil/salve/etc., etc., etc. will cure your mom’s cancer. You really need to try it. It worked for my cousin’s friend’s stepmom’s brother. Let me get you the information!”
If you have ever had a loved one with cancer, you’ve heard these offers. You know exactly how they sound. The personal heroism of a friend or neighbor or acquaintance or coworker, offered bravely to your face, can feel so affrontive and offensive. This is especially true when medical treatment plans are not working; when your loved one is especially vulnerable for any number of emotional or physical reasons; or—
wait for it—
when the person offering the miracle cure is otherwise uninterested, uninvolved, and/or unhelpful in the actual caregiving of the patient.
There. I said it. Do not come up to me offering miracles, period. I don’t have the energy to explain to you that, while broccoli is great and we should all definitely get more exercise, they alone are not going to abate the tumors in my mom’s lungs. I don’t have the emotional wherewithal to be polite to you while staring in disbelief that you yourself have fallen victim to believing some scheme.
And if you have not asked if we need anything, or brought us a cake or pie or casserole or loaf of bread in the four years since she’s been diagnosed, then you have an especially low level of credence or gravitas with me in terms of your interest in my mom’s well-being.
If you are a caregiver, you know exactly what I mean. We are on the same page right now. We are all preachers and choirs (or pots and kettles) at once.
But…that doesn’t mean we know what to do about these offers of help. As annoyed or hurt or exhausted as we may be, the fact remains that these are relationships we may need to maintain. Telling folks exactly how we think or feel about their unhelpful “help,” using all the words we want to use, is not exactly conducive to maintaining the relationships. So, we need a coping mechanism. We need a tool.
At some point, off the cuff, in one of my more emotionally raw moments, when faced with one of these offers, I let slip from my mouth: “you know what would actually be helpful?”
And, just as if in a sitcom, I jumped; surprised at my own words; time slowed to a crawl; I turned my head; I looked at my acquaintance, as if in molasses-slow-motion, terrified that she would be offended; and…
She looked right back at me, unaware of my sitcom-terror-moment, and said “what? What do you need? Let me help!”
And my world shifted from a sitcom to a Disney princess movie. Time sped back up, birds chirped, the sun came out, the clouds parted, and music started to play.
Well, that’s how it felt, anyway. Seriously: I was floored. Her genuine interest in helping had been proven, and I realized: she just didn’t know HOW to help, or WHAT to offer, so she had reverted to the only tip/trick/hack that she knew of on the topic.
My point is: as caregivers, we are so consumed by all that we have to do that we cannot imagine anyone in our lives or networks being oblivious to our reality. But, my friends, they are. All of our friends (and relatives and acquaintances and neighbors and coworkers) are understandably consumed by their own realities. When they occasionally can fall out of their own orbits to see what we are up against, it takes a lot of time to catch up with the status of things, let alone to study up on what we might need or not need. This is time that the folks in our networks usually don’t have, my friends. So, if they are aware of some one-size-fits-all grab-and-go panacea, of course that’s what they’re going to offer. These are, after all, unfortunately readily available and highly advertised.
Here’s the point: on that day that the skies cleared and my friend stopped in her tracks to ask what I actually needed, I learned that her heart was in the right place. Her intentions were good, even if ill-informed. And, I would venture to guess, that's the case 9x/10.
And so, the “pivot” was born. This became my tool, and I offer it to you here in hopes that you can make use of it as well.
(If you're a fan of the movie or musical "Legally Blonde," or if you love "Clueless" or "Mean Girls" or anything like that, this can alternatively be referred to as the "bend and snap." Don't ask).
The “pivot” is just the name I give to my blatant usury of the assumed good intentions of the poor soul who offers me snake oil. Here is the script:
Person: “I’m sorry to hear about your mom’s lung cancer. Have you tried making a smoothie from donkey fur? I hear that cures cancer.”
Me: “OH my gosh, thank you, that’s so nice of you to tell me. Hey, ya know, I’m really covered up on Thursday. Can you bring mom some lunch?”
BOOM. Done. Weapon deployed.
(The caveat, of course, is that you have to have a ready-made mental list of assistance that would be useful to you. Frankly, I think this is always good to have, so that you can always respond productively when folks ask what they can do, no matter how they actually ask the question).
Anyway: my favorite part of using the pivot tool?
You will *very quickly* separate the wheat from the chaff. You will immediately be able to gauge whether the person offering the unhelpful help was actually interested in helping, or only being unhelpful after all.
And, at the end of the day, they might actually come through.
Remember the western movie scene — the debonair dressed pitchman rides into a small frontier town in a wagon whose canvas sides are emblazoned with Dr. Arturo Pedic’s Acme Elixir. He sets up a stage, draws a crowd, and delivers the pitch.
Yessireeebob! My specially formulated Acme Elixir is a sure-fired medicament for any illness. One bottle of this miracle wonder is guaranteed to cure any malady. It is an antidote for ablepsy, ague, apoplexy, barrel fever, biliousness, dropsy, camp fever, consumption, french pox, grip, and even bronze john fever. Step right up folks. Ten dollars buys this marvel medicine!
According to an American Society of Clinical Oncology opinion survey, almost 40-percent of Americans believe alternative remedies alone can cure cancer — that’s right 40-percent believe in Acme Elixir! Oh my, we’ve been teleported right back to 1870 era medical idiocy! Our collective faith in evidenced based cancer treatment has taken a severe hit.
Why? I see a parallel to the campaign against childhood vaccines. In 1998, a fraudulent research paper published in The Lancet asserted combined measles, mumps and rubella (MMR) vaccine caused autism. Innumerable scientific studies proved vaccines harmless, but blaming autism on vaccines was a sensational and compelling newsworthy story, and I remember the stories!
The internet allows the easy creation of a sensational and compelling newsworthy event — a cancer cure. Webpages abound with astonishing survival stories from treatment by this, that, or the other alternative medicine thing. One common thread: all promise a sure cure for cancer. These are very believable presentations with videos offering jaw-dropping testimony bolstered by pseudo-scientific mumbo jumbo. The internet today functions like the 1870 era snake-oil salesman!
When diagnosed with lung cancer, one has but three choices: do nothing, alternative methods, or evidence based methods. Do nothing costs nothing and may work because cancer sometimes stops metastasizing without treatment. Alternative and evidenced based methods cost you money. Evidence based methods have another seemingly unrecognized advantage: outcomes are repeatable. Surgery, targeted therapy, precision radiation or immunotherapy works the same way for a very, very large number of people. Funny how hard it is to rundown actual results for large numbers of people treated with sure cure Acme Elixir.
Stay the course.
Almost every lung cancer survivor has a positron emission tomography (PET) scan these days. Now, a PET is often given with a computerized axial tomography (CT) scan. The diagnostician is a radiologist; a discipline that does not write in lingua franca. What do the report words mean? Here is a summary of my August PET-CT to interpret radiology speak.
INDICATION: (Why am I getting this scan) “The patient…with non-small cell lung cancer of the right main bronchus diagnosed in 2003 status post pneumonectomy….He has undergone previous surgery for bronchopleural fistula repair…Chemotherapy last administered May 2006…Cyberknife therapy for recurrent disease in March 2007…He more recently has cough and chest discomfort.” That’s me, no doubt, but this summary is important. Radiologists see many scans and sometimes results are misreported.
TECHNIQUE: (Test scope and method) Note details about the accuracy of the CT. “These images do not constitute a diagnostic-quality CT….” The CT results help to precisely map or locate the PET results but cannot generate a diagnostic grade image.
COMPARISON: (Other scans reviewed while looking at this one). “Report only (no image reviewed) from PET-CT 3/8/2013. CT of chest and abdomen 8/22/17 (looked at image).” A CT scan is normally performed first. PETs follow and accuracy is enhanced if the radiologist has access to prior images. To improve access, have all your scans done at the same medical facility.
FINDINGS: (The result) “…showed no convincing PET evidence of FDG-avid (fluorodeoxyglucose — radioactive tagged glucose seeking) recurrent or metastatic disease.” This is what we want to see in the first sentence. Then, the radiologist peels back the onion with detail.
“There is mild heterogeneous hypermetabolism (diverse increased rate of metabolic activity)…with a few small superimposed foci (above the hypermetabolic area that is of particular interest)…more intense activity showing a maximum SUV of 3.5 (SUV — standardized uptake value)….When compared to [past reports] uptake…showed SUVs ranging from 2.6 to 2.9. This is strongly favored to be inflammatory.” Relief —this is my chronic pain site caused by 3 thoracic surgeries in the same location!
“A somewhat retractile appearing mass (drawn back into lung tissue)…in the left upper lobe is stable in size…This shows minimal uptake…and is most compatible with the site of treated tumor.” My CyeberKnife-fried tumor scar. I do love precision radiation!
What are concern ranges for SUV uptake? First, consider what is measured — cellular metabolic rate; more simply is demand for glucose, the fuel of metabolism. Cells with high metabolism ingest more tagged glucose. The PET shows differences in consumption (uptake). SUVs below 2.0 are normal. SUVs above 2.0 are suspect but between 2.0 and 4.0, uptake could be from injury or inflammation. Readings above 4.0 tend to be cancer but there can be other explanations. Higher than 4.0 is likely cancer, especially when paired with a CT find. Cancer demands glucose to fuel mitosis or growth by cellular division.
Get and keep copies of all your diagnostic imaging. Keep track of the findings. I use a spreadsheet to record date, location and indications. Dr. Google is a great source for medical definitions. The best possible outcome for any scan is NED (no evidence of disease). May NED be with you.
Stay the course.
Facing a lung cancer diagnosis changes a person’s perspective about what matters in life and what doesn’t. Being diagnosed with cancer makes you put absolutely everything else to the side, or totally out of mind. You have the chance to let back in only the things that really matter back into your conscious mind. If you can do that, and spend more time focusing on things that really matter in the present moment, you will have completely changed and improved your mind and your life. I still get caught up in feeling anxious or scared about what might happen in the future and the negative impact it could have on my family, especially my wife and daughters. What’s helped me has been to realize that they are thoughts – they don’t have a physical presence anywhere and if you observe them but don’t chase after them, they go away.
If I could give advice to someone newly diagnosed, I’d probably want to say a few things.
1. Slow down. Information is going to be coming at you really fast and it can be overwhelming, especially with the internet making everything move at hyper speed. Take your time to digest what’s out there in terms of treatment options, support systems, heavy medical information, etc.
2. Get yourself into a respected cancer center as soon as possible. Find an oncologist that you trust and have a good relationship with, and then TRUST that doctor.
3. Take everything, except what your oncologist tells you to your face, with a grain of salt. There is a ton of real, semi-bogus and totally bogus information out there about magical cures and treatments. Ask your doctor about all of them but, in the end, do what he or she advises.
4. Take a step back, look at the road ahead as objectively as you can and try to be practical. It is the “C” word but, after all, it’s an illness not a curse or a death sentence. Come up with a treatment plan together with your doctor, follow that plan and do what you need to do in order to stay healthy
5. Don’t give cancer more power than it already has by thinking you can’t face it and just giving up. You can face it. Maybe not today, or all the time, but eventually and most of the time you can.
Lung cancer is just the same as any other kind of cancer. It will take the people you love just as heartlessly as any other form of the disease. It’s really good at taking people away; men and women, smokers and non-smokers, old and young, any race and origin. In fact, it’s better at that than most other cancers. We could all get cancer, and none of us would deserve it. We should fight it with research funding, trials, promoting new and existing treatments, by helping people pay for treatment, and everything else at our disposal. Not giving lung cancer the fight it deserves leaves us all that much more powerless to stop it from taking away someone we love.
A lady with lung cancer passed early this morning. I knew her well. She survived two surgeries claiming a lung, radiation, and many many infusions of chemotherapy. Indeed, her disease was being treated like diabetes or heart disease — a chronic but controlled condition.
Lung cancer did not claim her and death is not a celebratory event, but living a full and meaningful life despite lung cancer is indeed praiseworthy. In characterizing the lady’s life, full and meaningful are an enormous understatement.
In recalling our years together, I am struck by how few times we talked about lung cancer. We shared a disease but talked about stock shows, cars, fashion, movies, politics, family, travel, ranching, tomatoes, and friends. That she would not achieve NED didn’t bother her a bit. “I’ve got things to do and doing nothing ain’t gonna happen!”
I will morn her passing. I will also strive to emulate her lifestyle.
Stay the course.
I learned about my lung cancer in a roundabout way in the summer of 2017. I started having headaches and experiencing vertigo. I also noticed some slurred speech and trouble with fine motor skills like writing. I went to a series of doctors to try to determine the cause, including my PCP, an ophthalmologist, a massage therapist, and an ENT. Eventually, a neurologist ordered an MRI. I went in for the MRI and afterward the radiologist wanted to see me to “look at something.” From then on, it was like a cascade, with lots of people coming in and out of the room conducting various procedures and making calls to my wife. I ended up getting the news from the attending ER physician and several interns or residents. They still had to do a biopsy to be sure, but based on the MRI and chest CT scans, they were pretty sure it was lung cancer.
I don’t remember being floored by the news and I didn’t collapse or anything. Maybe I was numb to it but in the moment, it seemed obvious like, “Of course that’s what it is!” I actually felt bad for the residents and interns who had to tell me. It was like they were training on how to tell someone they have cancer. My wife, Judy, and my sister-in-law, Mary, who is an RN, arrived and I was grateful to have them there for support. Two days later, I underwent surgery to remove the largest brain tumor. They did a biopsy using that tissue, which confirmed my diagnosis: stage IV adenocarcinoma.
Judy and Mary made appointments for me with a thoracic oncologist and a neurological oncologist at Memorial Sloan-Kettering. Initially, the plan was for me to start chemotherapy and radiation. My oncologist also ordered the MSK-IMPACT genetic test panel to identify any treatable mutations. The day before I was to start chemotherapy, my thoracic oncologist called to tell me that the test came back EGFR positive and I didn’t need to go through with chemo. She told me that I was a candidate to take Osimertinib, a targeted therapy drug. I still had to do five rounds of radio-surgery as well, but the treatment options changed completely. There was no question about whether I was going to take that or not.
One of the biggest challenges was recovering from surgery and getting back to work. That wasn’t easy, but the support from my family, friends, and employer has been tremendous. I have the good fortune to work for a company that puts people first, and they have been very accommodating. From the beginning, my large family started coming to visit and help with things like cleaning our house and delivering meals.
I’ve been a pretty avid runner for several years. Before I was diagnosed, I ran 8 ultra-marathons, 7 full marathons, 10 half marathons, and a bunch of shorter races. Getting back into running regularly took a back seat to recovering from my surgery and the initial rounds of radiation. I was able to start running pretty regularly about 2 months after diagnosis. So far this year, I’ve run some 5Ks and trail races, three half marathons, one full marathon, and one 50K ultramarathon. The marathon, especially, was a big milestone for me. I ran the New Jersey Marathon, which I had finished three times before cancer. Being able to run it again after my diagnosis was a really uplifting and fulfilling experience for me. I’ve been fundraising for Fred’s Team, the running charity for Memorial Sloan-Kettering Cancer Center.
Since my diagnosis, I’ve done a lot of research and made a lot of connections online, both of which have helped me understand and deal with cancer better. LUNGevity’s Facebook groups have opened up a large network of people who are more than happy to provide support and information, answer questions, and share their experiences.
I think in the past, and to some extent still today, most people only considered a ”survivor” to be someone who had been diagnosed with cancer, underwent treatment, and was in remission or totally cancer-free. That definition leaves a lot of people out, myself included, who are on long-term treatment. To me, a “survivor” is anyone who has been diagnosed with cancer and is still alive. Some of us may never be totally cured but we could survive for a long time thanks to new treatments liked targeted therapies. Hopefully, we’ll survive cancer long enough to live a full life and eventually die of something else, like a skydiving accident at the age of 97!
I was diagnosed with Stage IV lung cancer in September 2014. Like many people, my diagnosis came as a huge surprise to me and my family. A friend told us about the Breathe Deep Kansas City Walk that was happening in our area. We called our team The Village People because we like to say, “It takes a village” to fight this thing. The Breathe Deep walks provide an opportunity to raise awareness and money in your own community. It’s very powerful.
I attended my first National HOPE Summit in Washington, D.C. in 2015. Lung cancer is so isolating and overwhelming. Then you get there and meet other survivors and caregivers and experts. I feel like I always leave HOPE Summit with 150 new friends and then I don’t feel so lonely when I get home.
The next year my wife and I attended the 2016 Hope Summit together, she finally understood how these friends I had been talking about for the last year could be so intertwined with my health and healing. We made even more friends and keep in touch all year long through social media and other events around the country.
Once you get to HOPE Summit, it’s so empowering that you want to get involved. I found out about the LifeLine Support Partner program at HOPE Summit. LifeLine is nice because you can work remotely and there’s an opportunity to give back. My mentor, Matt Ellefson, is one of those people who LF relies on to have multiple mentees and he was very inspirational for me because of our similarities and what we’ve been through. It was a very good fit.
LUNGevity tries to match people based on age, gender, diagnosis and geographic location. It’s always felt very comfortable. I’ve had mentees assigned to me and we usually have a really good talk and maybe hear from them once or twice and that’s all they need at that time. We talk on an as needed basis. Hopefully, I’m encouraging people depending on where they are. A lot of the time, the person is newly diagnosed and it’s very fresh with them. As a mentor, you have to put yourself back in that frame of mind. It’s important to remember that you’re not there to fix their situation. You’re there to listen to what they need and let the conversation evolve.
The most rewarding thing about being a volunteer is being able to help someone else by sharing my experiences and the ups and downs that I’ve had. If I give any advice it’s always to find a specialist who is an expert when it comes to your diagnosis type or mutation. It’s so important to be very confident in your medical team. Don’t be afraid to get a second opinion. If your doctor isn’t jiving with you, keep looking. It just feels good to help somebody through this because as we all say, it’s really hard for other people who haven’t gone through it to understand.
When I was diagnosed, I was given 9-18 months. I’m coming up on 3 years and 11 months and my wife and I are going out to Los Angeles next month for the Stand Up for Cancer telecast on my 4th Cancerversary. I hope that my efforts as a LifeLine volunteer will inspire the people I mentor to do the same for others. I’m a big believer in paying it forward. It’s a big world and there are a lot of people affected by this disease.
I've said it before and I'll say it again: cancer can be as hard, if not harder, on the loved ones than the patients. Our family is very close - I don't have any siblings and my husband and I don't have children. Our family unit is small. After 2.5 years, my husband and I have a process. He goes with me to all of my scan result appointments. As soon as Super Doc gives us the results, Neal steps out and texts or calls my parents with the updates. I always want to be with them if we have to give them bad news. My parents live 4 hours away; otherwise, I think they'd crowd into the exam room with us.
Although we had to give them bad news a couple of weeks ago, we actually had something in our favor. A lifelong friend of mine was visiting with them on the way to take her daughter to tour a college. She was able to keep my parents somewhat balanced this time. I'd been preparing them for the results - figured this was coming. But no one wants to have to call their parents and tell them the cancer is back. Stupid cancer.
I've survived a lot of medical treatment. The most sophisticated and creative was while in the care of an extraordinarily gifted, courageous and talented surgeon. We invited him and his wife to dinner to renew our acquaintance and review the bidding. The dinner was memorable.
I could launch into the details of my 8 surgical procedures performed by this brilliant man but that story is told elsewhere. Of more interest to this community is what are the indicators of brilliance in a surgeon? Unlike general medicine or oncology, surgical encounter time is brief. One can ask about reputation, but thoracic procedures are risky and outcomes are variable involving heart, lungs, vessels, transplants and a myriad of complex procedures to the engine compartment of the body. Using my surgeon as a model, it might be useful to develop a means test of thoracic surgical competence that a survivor might use to evaluate suitability during the span of a short pre-surgical consultation. Here is my list.
Is your surgeon friendly? Is this man or women one you’d enjoy having a coffee or a beer with? Does conversation flow easily? Does the surgeon respond to your elements of conversation? Does he or she listen? Do other practitioners or office staff enjoy being around him? A surgeon that is pleasant is likely to be a surgeon that is sympathetic, benevolent and a true believer of the tenants of the Hippocratic Oath.
Is your surgeon inquisitive? Surgery is a melding of art and science. The art is “what” to do and the science is “how” to do it. Thoracic surgeons are a small tribe that practice in a complex environment. When something new is discovered, your surgeon should be very interested in investigating it for application. If your surgeon already thinks all the “what” questions are answered, find another.
Is your surgeon respectful? In your pre-surgical consultation, you ought to feel like the important one. Your medical condition needs to be acknowledged as important and your feelings, fear, anxiety, and uncertainty should to be taken into account. If your surgeon doesn’t use your name or look at you or attempt to help you relax during the consultation, find another. If your surgeon makes a grand entrance, surrounded by a posse of assistants, and talks to them about your case, find another quickly!
Is your surgeon decisive? At the pre-surgical consult, there is one key decision to be made: operate or do not operate. This ought to be made then and there. If your surgeon feels the need to discuss your case with others, find another. There is so much uncertainty in lung cancer surgery and each encounter will require a decision. Your surgeon needs to come equipped for making decisions, alone.
Is your surgeon acutely intelligent? Compose a non-surgical question on the surgeon's interest or hobbies ahead of the consultation. Listen for passion and detail that indicates sincere interest and evidence of accomplishment. Intelligence starts with curiosity and leads to ability to assimilate knowledge and use it in cross functional ways. A surgeon with a photography interest would know depth of field (the f-stop setting on a camera) is analogous to layers in skin, tissue structure, and visual focus precision. Photography concepts relate to surgery yet it is a diverse field of intellectual pursuit. Avoid those who are interested only in surgery or who say they don’t have time for anything in their life but surgery.
We had a wonderful reunion made even more special by the attendance of my daughter, son-in-law and granddaughter. My daughter met my surgeon 15 years ago while I was near death. She is also a beneficiary of his skills. Ten years after my surgeries, I asked my surgeon to help find a skilled brain surgeon to remove my daughter’s complex meningioma. He moved heaven and earth to do so. Add compassion to my list.
Stay the course.
Using the words free and invaluable to characterize lung cancer medical care is a hard sell. I’ve seen so many scams promising this, that, and the other thing that deliver nothing more than a money pit. So I was indeed skeptical when Dr. David S. Schrump introduced his National Cancer Institute Intramural cancer treatment program, at our April 2018 LUNGevity Summit, with the words “no cost to patients, including travel and lodging.”
Why didn’t I know about this resource? I’ve encountered so many newly diagnosed folks who had no or inadequate insurance and who had to forgo treatment because of financial concerns. Yet, there is a sophisticated, taxpayer funded, medical system that designs “unique to patient” protocols including surgery, radiation, chemotherapy, and newly emerging treatments. And, it is free! All patients at the NIH are on investigational protocols, including those who are receiving standard care, so that their tumor tissues, blood, etc can be used to develop new cancer therapies. Once a patient is enrolled onto a protocol, care is provided at no cost. There is no third party billing, deductables, etc.
Then on the second summit day, I learned Dr. Schrump’s Surgical Oncology Team is developing unique vaccine-like immunotherapies using tumor material surgically removed from a patient — a tailored and individualized immunotherapy agent. In an ongoing vaccine study, Dr. Schrump’s team observed immune responses to lung cancer-associated proteins in 60% of patients; several responders have had unusually prolonged disease free-survivals, supporting further evaluation of the vaccine. Dr. Schrump hopes that personalized vaccines may one day be an alternative to adjuvant or post-surgical chemotherapy, the current standard of care. Much more work needs to be done to determine to feasibility and potential efficacy of this approach.
Moreover, they are using aerosol delivery methods as alternatives to IV or oral administered drugs to increase the uptake of drugs into lung cancer cells, and “prime” them for attack by the immune system. Indeed, his presentation was filled with very innovative methods of attacking lung cancer with promising results.
If you are an American and don’t have the financial resources for lung cancer treatment or if your medical team has run out of treatment ideas, contact the National Cancer Institute. You don’t need a physician referral. Email [email protected], introduce yourself and your diagnosis stage and type and put your phone number in the email. Free and invaluable may indeed be words appropriate to use in concert with lung cancer treatment.
"Count-off...One, Two...Count-off...Three, Four...Bring it on down now...One, Two, Three, Four, One-Two...Three-Four!"
My life is filled with counting. As a young soldier on the march, we counted cadence to stay in step. The rhythm of the cadence was an elixir to the mile-upon-mile-upon-mile of forced march in full combat load. They always scheduled the forced march on the hottest day, or the wettest day, or the coldest day of the year. One memorable march was the day after a hurricane! Weather or not, we marched and counted.
After diagnosis with lung cancer, my life embraced a different sort of cadence. There was the countdown to scan day, then time stopped waiting for results. One...what time is it...just ten in the morning...the clock battery is out...is it back...how bad...how many nodules...how big...ten-oh-two...mets in the bones...liver also...scan tech didn't smile...he saw something...ohGod.... Life just stopped waiting for results. Time stopped!
Waiting for scan results is absolute misery coupled with measured doses of agony and anguish, torment, despondency and gloom thrown in for good measure! Each day was a twenty-five-mile forced march that started but never ended. Cancer sucks but waiting for scan results sucks squared!
Stay the course.
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.
"Hindsight is 20/20!"
"You know, in retrospect..."
"Looking back now, I'd..."
"If I had it all to do over again..."
"If I had known then what I know now..."
Chances are, if you're a caregiver, you're guilty of saying at least one of these catchphrases at least a little bit often.
I know I am. A LOT a bit often!
Why is that?
Why is it that we never feel prepared to be a caregiver, and always feel like a little of our well-earned wisdom would have been useful at the beginning of our experience?
Here's what I think: our loved one's diagnosis knocks us for a loop; we stumble, we grasp, we stand back up, we take action, and then we can usually coast for a while--and occasionally, the cycle repeats.
But: we were never given a chance to study for this test. We weren't given a warning. We catch the curveball using the only skill sets we already have, and we run with it.
What the **** just happened?
Where do we go from here?
Get our heads back in focus, get info, get a plan.
Stand back up:
We go through our days--every day--as best we can. Somehow, stuff gets done. If it doesn't, we move on.
Take the info we found and start acting on the plan: a testing plan, a treatment plan, a scheduling plan, a support plan, any plan.
The plans in place gradually become blessedly routine. The less work we have to do to establish the plans as the plans settle, the more surprised we are that our days do still revolve--but they just revolve around something we never would have expected. (This is sometimes referred to as the "new normal.")
Any caregiver is familiar with this basic framework.
Finding the way that this paradigm can shift and meld onto any particular family, situation, or lifestyle?
There's the rub.
That's the part that's not so simple.
The GOOD news is: that's the part where other caregivers are the best and most helpful resource.
What calendaring app do you use? What foods help with nausea? What do you say to your kids? How do you organize medical information? Which chores should I prioritize? How can I draw boundaries with my family? How can I ask my friends for the support I need? How can I communicate better with my loved one's medical team? Where can I go for reliable supplemental information? How do I find self-care time? And, by the way, what IS self-care?
At the end of the day, one thing is patently obvious: with most new life experiences, you may not even know what resource/help/knowledge you need (or needed!) until you are well on your way. Caregiving is a prime example.
To that end: the best and most helpful source--the reference with the breadth and depth of life experience to draw upon--are your fellow caregivers.
LUNGevity has TONS of ways to connect with a network of folks with similar experiences. Just to name a few: the LUNGevity Caregivers Facebook group (http://facebook.com/groups/1009865522379898), the LifeLine mentorship program (http://lungevity.org/for-patients-caregivers/support-services/peer-to-peer-mentoring), and the Caregivers message boards here on the Lung Cancer Support Community (http://lungevity.org/for-patients-caregivers/support-services/lung-cancer-support-community).
(Not to mention the Caregiver materials library at http://lungevity.org/for-patients-caregivers/caregiver-resource-center).
Also: LUNGevity hosts the only regular caregiver-focused Twitter chat in the lung cancer advocacy field. We meet on Twitter under the hashtag #LCCaregiver every first Wednesday of the month, starting at 8:00pm Eastern time. This is a sort of live chat room, addressing issues that caregivers want and need addressed. All are welcome!
This month, we will be discussing this exact conundrum: what do you wish you had known before you became a caregiver? What can your fellow advocates (and advocacy organizations like LUNGevity) do to help you learn what you need to know at the front end? How can we help you "grasp" the info you need in order to make a smooth transition into your role, and get settled as quickly as possible in a somewhat comfortable routine? How can you be supported in your role by being given notice ahead of time of what you may need or want to know, do, or think of?
How can you catch the signals ahead of other curveballs?
To assist in answering these questions, and to continue this conversation, we'll be hosting a sort of "Caregiving 101" for our chat this Wednesday. Several experienced caregivers will offer their best advice--the things they wished they had known before starting their work of supporting their loved ones through a lung cancer diagnosis. Please join us to learn together; to hear from others who understand the ups and downs of what you're going through; to share your stories and your advice; and to help us understand how we can better help each other.
Wednesday, June 6th, 8pmET, on Twitter, at #LCCaregiver.
I can't wait to "see" you there! Thank you, my friends!
“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.
Sometimes, HOPE is a kitten.
Okay, okay, sure, I know, that sounds a little weird. And a little bit like a desperate attempt to pass a poetry exam.
Let me explain…
Hope is strong and confident. Hope can be fickle. Hope can be hard to corral, name, and predict.
Hope can be ephemeral, and hope is also everlasting.
Hope can be full of contradictions. Hope can take many forms, directions, shapes, and sizes.
You’ve heard the expression “herding cats?”
Hope is one thing that cannot be herded. It is inspired, it cannot be forced, and it is felt differently by different people.
And hope, like most emotions we encounter after lung cancer has entered our lives, can have a complicated duality. An ambivalence. A way of being prickly when it doesn’t fit in our hearts, and a way of busting our hearts wide open.
A way of showing up without telling us why it’s there, and staying with us, warm and fuzzy and comfortable and soft, exactly when we need it most.
And that duality and ambivalence is essential to its nature. It isn’t going away.
…Okay. You get it. Hope is like a kitten. I’ve gotten just about everything I can from that analogy!
But, that’s not entirely what I mean. Let me explain (some more). Let me show my hand.
By way of update:
My mom is one of the people for whom I am a “caregiver.” She has been living with Stage IV NSCLC for a little over three years now. She was on a clinical trial of an immunotherapy medication for just over two years. She’s coming up on a year of having not been on any active treatment. She left the trial by choice, after experiencing some vague side effects that were determined to be likely due to the treatment (more on that another time).
She is exhausted every moment of every day, to some extent. This woman who was always the most productive, vital, “type-A,” energetic soul I had ever met is now essentially housebound. Her profound lack of vim and vigor is the antithesis of her identity, and it has left her feeling robbed. Some days she feels like going out to lunch or running one errand; but there are usually weeks between these good days.
(Side note: we have long made her medical team aware of her severe fatigue, and it was determined to likely be a result of her treatment. Because every patient and every situation is different, please always make your loved one’s medical team aware of every side effect that is experienced, especially when these interfere with your person’s quality of life!)
So, with these long hard days of being stuck at home, not feeling like herself, one might imagine that she would feel glum, and downtrodden, and defeated.
The answer is: of course she does! She’s human!
(Trick question, with a trick answer…)
See, the thing is, that isn’t ALL she feels. Nope.
Lately, despite choosing to not be on treatment, and despite being overwhelmed in the way that only a very tired person who has gone through a lot can feel (I know you all understand), she has also felt…hopeful.
Which reminds me:
She woke up a couple days ago
You heard me.
KITTENS. She wanted kittens in the house. Kittens. Baby cats. Catlings. Cat blossoms. Cat kids. Cat puppies.
We currently have two grown cats. We worship the ground they walk on. We have had both cats and dogs in the past. Pet adoption is an important cause to us, and we tend to make a new addition to the family every 5-8 years.
Following our normal timeline, we have talked about adopting kittens a few times since mom’s diagnosis in 2015. But, 10x/10, she has decided against the idea, once even as I was literally walking out the door to head to the shelter. She has been on a scale somewhere between hesitant and heartbroken each time, and each time because she did not feel she could handle the joy that a new pet brings.
Let me repeat that: she felt she could not handle, or did not want to welcome, the particular joy that a new pet brings.
The joy of a new pet is like Spring: It’s promise. It’s a belief in a tomorrow.
Disclaimer, because I feel I have to make one: the decision to adopt a pet is a serious one, and should not be made lightly. We are very experienced cat owners, and we have gone through the cat-to-kitten introduction process many times over the years. In a caregiving situation, pet care should be particularly deliberately and honestly discussed, since caregivers may or may not have the ability or desire to assume those responsibilities.
But, in our case, that situation could not be more perfect. I mostly live with my folks as part of my effort to help out, so I am around (and, let’s face it, more than willing) to contribute my part to Project KittenHope. At the end of the day, the kittens will become part of the whole family, owned and loved by all of us.
When my mom declared that the haze had lifted and that she was ready to take this step, it was an automatic victory. It was a sign.
It was hope.
Thus: this week, into our lives walked a two-month old little girl cat and a two-month old little boy cat.
And, yet, those of you who are here reading this understand, not needing any disclaimer. Because -----------------------------------------------------------------------------------------------*-
…one of the kittens just typed that.
As I was saying: because you understand this daily tug of war, seeking and understanding hope.
So, the past few days, while welcoming our new additions, I have literally been herding cats…and herding hope. It appears where it will, often when least expected, and gives its gift of easy breathing and lifted hearts.
Just like the kittens.
This past weekend, LUNGevity hosted their National HOPE Summit in Washington, D.C.: an annual gathering of lung cancer survivors and co-survivors (caregivers!) that is regularly the largest such meeting in the country. It is part family reunion, part medical conference, and part survivorship bootcamp: fellowship with folks who understand what the lung cancer experience feels like; experts who inform the crowd on the most cutting edge treatment and diagnostic research; and tips and tricks for living one’s best life as a lung cancer survivor or caregiver. The event leaves everyone enlightened, invigorated, and aware of information and tactics that can introduce HOPE where there may have been none.
Thanks to the LUNGevity Foundation, May is officially National Lung Cancer Hope Month. We HOPE (see what I did there?) that you will join us every day this month in ongoing conversations about all the HOPE that is out there in the lung cancer field: new diagnostic tests, new medications, new genetic sequencing, new surgeries, new forms of radiotherapy, new places to turn for assistance, new clinical trials, new emphases on patient navigation, and more. (See LUNGevity.org for more of this. Seriously, it seems there is breaking news every day!)
We also HOPE that you will share with us those moments, long and brief and in-between, that give YOU hope, inspiration, and a reminder of why we wake up every day to advocate for patients: for new treatments, for access to help, for better resources, for more information, and—as LUNGevity says--for a world where nobody dies of lung cancer.
I'm in the middle of my quarterly scan appointments. While I was waiting for my blood draw yesterday, I noticed a couple that was apparently new to the oncology clinic. The wife is the patient and, when she was called into the lab, her husband got up to walk with her and she told him she was fine, just going for a blood draw. I looked at his face and saw fear and I just wanted to give him a hug. This is the part I hate the most - when we look into our loved ones' eyes and see their fear. I just want to fix everything and I can't; we have so little control over this part of our lives. I have no idea why she was there or what her diagnosis is, but I definitely said a prayer for them last night.
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.
My lung cancer diagnosis came as quite a shock to my family, my doctors, and me as I’ve always maintained a healthy lifestyle. I exercised regularly, ate healthily, never smoked, and enjoyed a variety of outdoor sports and other activities with my husband and our three children. I worked as a learning specialist for children ages K-8 and loved my job. Everyone I was close to commented that I was “the healthiest person they know.”
But in March 2011, after worsening back pain, I visited my physiatrist who ordered an MRI. I figured I had a disc issue with my back or created an injury from too much sitting during work. When I saw my doctor for the results, she was speechless; she told me my upper body was "riddled with lesions." I said there must be some mistake, that the scan was someone else’s. As the doctor insisted there was no mix-up and this was truly me, I felt as if the floor had given way under me, a feeling that never seemed to fade from my day-to-day experience.
I was 54 years old. A few days later, I was diagnosed with Stage 4 non-small cell lung cancer. Since I was an otherwise healthy, active, never-smoker, the doctors at Memorial Sloan Kettering Cancer Center predicted I would have the EGFR mutation, and the biopsy results proved they were right. The targeted therapy, Tarceva, shrunk my tumors, and with tolerable side effects, allowed me to continue leading a relatively normal life. I even took up sculling, a sport that I had always aspired to learn.
However, I was disappointed when only after 9 months my cancer figured out a “way around” the Tarceva, which is expected for targeted therapies (referred to as acquired resistance). Thus, began my participation in a series of clinical trials and chemotherapy, all with mixed results and, at times, difficult side effects, which forced me to retire from my work which I truly loved and still miss a lot.
One bright period during these trials was a 14-month durable response from a trial combining Tarceva and the immunotherapy drug called Nivolumab, also known as Opdivo. Unfortunately, after 14 months I had to be quickly removed from this trial due to adrenal failure and colitis. In addition, I have been taking blood thinners since the diagnosis because of a DVT that was found at that time, and a couple of years ago I had a brain tumor surgically removed. My latest battle is with Leptomeningeal Disease, against which I hope to beat the odds once again.
Throughout my treatment, I’ve taken advantage of different integrative health services to help manage symptoms and side effects, such as acupuncture, counseling, support groups, and meditation. I can’t say these endeavors were always helpful, but it was important for me to try to find alternate ways to manage symptoms, both physical and emotional. However, over time my stamina began to wane, and my sense of self efficacy began to diminish. It became increasingly frustrating not to be able to do the things I always enjoyed. The treatments and their side effects can wear you down.
Initially, I struggled to find camaraderie with other survivors who have the same mutation as mine. Social media has been particularly helpful, especially in the beginning when I was trying to learn about different treatments and find a community. LUNGevity, Cancer Grace, and Inspire, and Lung Care Alliance were all useful sources of information and support.
My husband has been a great support and care giver. Initially, he dug into the research to learn what treatments were in development, so we knew what was in the pipeline. Moreover, my children have also been there for me. Even though they’ve grown up and don’t live at home anymore, they still come to visit me as often as they can. It has been difficult for me to accept not being able to participate in their activities and lives the way I was able to when I was healthy. It has been a continuing effort for me to feel “a part of the game.”
If I could share my experience with someone newly diagnosed, I would recommend getting as much information as you can from credible sources and not being afraid to get second opinions. It’s best to be treated at a major cancer center even if it means traveling because the research experience, depth of knowledge, and specialists they provide are cutting-edge. I would also recommend participating in clinical trials if they’re an option, as well as trying to find people to connect with who are going through similar situations.
Since my diagnosis, life has been a roller-coaster ride of living with uncertainty and trying to function amidst toxic side effects. I try to appreciate the good days and keep active. This spring will be my seventh-year anniversary living with Stage IV lung cancer. I am grateful for those who are raising awareness of lung cancer as a growing epidemic in non-smoking women and am excited to share my story to help other patients. I am especially interested in helping to erase the stigma that lung cancer is only a smoker’s disease, and hopefully increase research funding to the level it should be.