Applying for disability

My sister, a former social worker, recommended that I apply for Social Security disability benefits as soon as possible after diagnosis. It would never have occurred to me, and it sounded complicated.

As it turns out, though, if you have Stage IV lung cancer and have a work history, you probably qualify for disability. The government may even fast-track your application to make sure you start receiving cash assistance as soon as possible.

You can fill out most of the application online. There is a lot of paperwork to gather up. Once you have finished the application and gathered most of the documentation, there is an in-person interview at your local Social Security Administration office. Following the interview, the government investigates your claim by contacting doctors who have treated you.

I applied in March 2013 and started receiving benefits that July. By “benefits” I mean money, directly deposited into my bank account. Not only do I receive benefits, but my daughter, as the dependent child of a disabled adult, receives benefits, too – and her benefits will continue after my death. I have no life insurance because I never got around to buying any when I was healthy, so this will be huge for her when I am no longer here to help support her financially.

The kicker: Social Security pays disability benefits “…if you have worked long enough and have a medical condition that has prevented you from working or is expected to prevent you from working for at least 12 months or end in death.” (Emphasis added.) Stage IV people, we qualify under the “or end in death” clause. For me, applying for disability and receiving it was as much a confrontation with my mortality as my consultation with the surgeon.

For more information about applying:

http://www.ssa.gov/pgm/disability.htm

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What it’s like to have a port inserted

As soon as it became clear that my initial treatment would be chemotherapy, the doctor recommended a port insertion. I wondered: What’s a port?

Thinking back now to all the confusion and worries of those early days, I couldn’t even tell you anymore if it was a doctor or nurse who explained ports to me, although I am sure someone did. I can tell you, though, that my young cousin, who has a port for managing a long-term illness, came to visit me on my birthday, just before I got my port. She brought me a delicious and beautiful cake, and showed me her port and explained how it works. Truly, this was one of the nicest and most helpful things anyone has done for me during my cancer treatment – so nice and helpful, in fact, that it makes me want to linger around the cancer center, checking in on new patients: “Are you getting a port? Would you like to see mine?”

A port, sometimes called a Port-A-Cath, Medi-Port, or PowerPort, is a small medical device that makes it easier to access the veins. It looks and feels like a small, solid button, firmly anchored into the soft tissue of your chest, just under your skin. My 8-year-old daughter calls mine my “button.”

By the time you are diagnosed with cancer and your treatment plan is taking shape, you’re most likely familiar with the minor ordeal of IVs and blood draws. Phlebotomists and nurses have stuck you, drawn blood, administered intravenous medication and fluid, moved IVs to reduce the chance of infection, and so forth. Perhaps they have stuck you more than once trying to find a vein, or perhaps they have complained about your particular veins: so small, so prone to roll out of the way!

A port reduces the hassle of drawing blood and starting IVs. Both jobs can be done by inserting a needle directly into the port. There is less mystery and suspense with a port than with the veins in your forearm or hand: it works just about every time, with a fraction of the false starts. Yes, there is still a pinprick as the needle goes into the port, but there are virtually no misses, and no risk of collapsed veins.

Inserting a port is a relatively minor outpatient surgery. In my case it took about half a day, from showing up at the hospital to being released. Once the incision heals up, you don’t have to think about the port very much: you can swim, take a shower, and so forth. (You just can’t play heavy contact sports like football or hockey, because you need to avoid any direct blow to the port.)

A port should be “flushed” once a month. This is done by injecting saline solution and a small amount of a blood thinning medication into the port. If you’re using your port for chemotherapy infusions or blood draws on a regular basis, the nurses should automatically flush the port each time they use it. Flushing the port only becomes an issue when and if you begin going more than a month without using it for testing or treatment. The other day I asked to have my port flushed at a doctor’s appointment, because it hadn’t been used in a month.

The port does not completely protect you from needle sticks. My first chemotherapy infusion, if I remember correctly, was administered through an IV in my arm because the port insertion was still healing. Not all nurses and techs are allowed to use the port; they need the correct training, and often a doctor’s order. For basic blood draws for labs, sometimes a butterfly needle in the arm is just as easy; at the university clinic where I get my primary care, I don’t think anyone is trained to access a port and they don’t have the right equipment. At The Cancer Institute of New Jersey, when I wanted to use my port for IV contrast during a CT scan, they had to call down the nurse who was qualified to do it. At Sloan-Kettering, they would not use my port until they X-rayed it to be sure it had been inserted correctly, since they had not inserted it themselves. In general, for any test or treatment other than a chemotherapy infusion, if you prefer the port to a needle in your arm, you have to speak up.

Here are a couple of useful links about ports:

http://well.blogs.nytimes.com/2012/09/20/needles-or-port-a-cancer-patient-decides/?_r=0

http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Chemotherapy/Linesports/Implantableport.aspx

And if you would like to see what a port looks like once it is inserted, and have more of a visual sense of how it works, this YouTube video by Oncology Associates in Omaha, Nebraska is pretty good:

https://www.youtube.com/watch?v=FiDQAfF2TKc

 

 

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Even with stage IV lung cancer, long-term survival is possible

When they diagnose you with advanced lung cancer, of course the first terms you type into your search engine are things like “stage IV lung cancer survival” or “stage IV lung cancer life expectancy.” Your nurses and doctors tell you not to do it, but of course you do it anyway. When you find the articles, of course your eyes scan right past all the caveats and reassurances to the terrifying statistic itself: the median stage IV non-small-cell lung cancer life expectancy is 8 months. The 5-year-survival rate is less than 10 percent.

(The typical caveats and reassurances are, in fact, important, even though at the time they went in one ear and out the other. Those statistics are from 2005, before the newest treatments were available, so the real life expectancy may be longer now. Life expectancy varies enormously with type of cancer, age and general health at time of diagnosis, gender, and other factors. Most importantly you are not a statistic, but a unique human being.)

At first, when people encouraged me to be hopeful, it just irritated me, especially when I learned I didn’t have any of the three major known gene mutations (EGFR, ALK, or KRAS). When people told me their lung cancer survival stories, I would just mentally tick off all the reasons their cases were not like mine. Sure, I’d think, you’re doing great now, but you weren’t stage IV, or your cancer was operable, or you have EGFR and could take Tarceva.

I appreciated having an oncologist who didn’t try to sugarcoat anything for me. Frankly, if Dr. Saraiya had told me I would be fine or should be optimistic, I wouldn’t have listened to anything else he said after that. His estimation, based on all his clinical experience, was intentionally more vague than the statistics because he knows how hard it is to predict anything for an individual patient. He said he usually thinks of a patient’s prognosis in terms of “weeks to months,” “months to years,” or “years to decades.” He thought mine was “months to years.”

I only started believing I might live longer when I began meeting other long-term survivors of advanced lung cancer of types similar to mine. We are scattered all over the world, so the only way to meet them was through the Internet. First, through a friend who works in the pharmaceutical industry, I met someone who was diagnosed in 2007. She was dealing with fatigue, lung conditions, and side effects – but when we connected by email, she was traveling in Italy. ITALY.

She told me about a program called the Lung Cancer Living Room, organized by the Bonnie J. Addario Lung Cancer Foundation in California. It’s a monthly in-person support group, but the meetings are livestreamed, so you can watch them over the Internet. I watched one meeting, and as the camera circled the room, one survivor after another shared how long she or he had been living with lung cancer. It really did something to me, to see a roomful of survivors.

I beat the eight-month mark in August 2013, just as I was discovering my ROS status and beginning to take crizotinib. Now it’s been a year. I am daring to think of myself as a long-term survivor.

Note: Some articles I found helpful in preparing this post include http://lungcancer.about.com/od/whatislungcancer/f/stage4lifeexpectancy.htm, http://www.cancer.org/cancer/lungcancer-non-smallcell/detailedguide/non-small-cell-lung-cancer-survival-rates, and, thanks to new friends on smartpatients.com, “The Median Isn’t The Message” by Stephen Jay Gould: http://people.umass.edu/biep540w/pdf/Stephen%20Jay%20Gould.pdf

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Poked and prodded: dealing with lung cancer tests and procedures

The first six weeks after a lung cancer diagnosis are a grueling battery of tests and procedures. You may have any or most of the following within a very short time: bronchoscopy, biopsy, CT scan, PET scan, brain MRI, port insertion, radiation, lung surgery, chemotherapy infusion. All these have to be scheduled alongside consults with oncologists and surgeons, possibly even two or three of each.

I’m not going to lie: It’s miserable. Most of these procedures and tests have to be done before you can even begin actual treatment, so if you already have symptoms from your lung cancer, they aren’t improving yet. You may be coughing, short of breath, weak, tired, and/or experiencing pain. Your doctors may be prescribing steroids to manage your symptoms in the short term, which can interfere with your sleep and change your moods.

Some tests and procedures require special preparation: no food or fluids after midnight before most procedures, no food or fluids 2 hours before a CT scan. Some start early in the morning, at a hospital far from home. Some, like a port insertion, require anesthesia; others, like a PET scan, involve a lot of waiting and holding still. I tend to get migraines, and many procedures create the perfect migraine storm: sleep deprivation, stress, no coffee, no breakfast and reduced hydration mean that I often wake up from anesthesia with a throbbing head. 

A few things help. I usually have anti-anxiety and migraine medication at home, and when I had my port inserted the doctor approved my taking a small dose of anti-anxiety medication the morning of the procedure. I’ve also learned to always ask my partner to pack my migraine medication, and to ask the nurses if I can take it immediately after waking up from anesthesia. (The nurses have to ask the doctor before they can give an answer, so my partner makes sure to ask the question early.) I also ask my partner to have food and water ready for the moment I am allowed to eat and drink, often something very mild and soothing, like a milkshake or smoothie.

For a PET scan, you have to lie still in one place for a long time and it’s boring, but I’ve heard that some facilities allow you to bring in your own music CDs or audiobooks, and can play them for you during the scan. If you think this might help you, ask if it’s possible. I’m fortunate not to be particularly claustrophobic, so that aspect of PET scans and MRIs does not especially bother me, but if you are at all claustrophobic, let the techs know so that they can be as supportive as possible.

Every time I have a test or procedure, I try to find something, however small, that I can control, or at least be assertive about. At first this was totally unconscious, but as my treatment progressed, it became quite conscious and intentional. Sometimes it’s bringing my own anti-anxiety and migraine medications, and getting approval from the doctors to take them before or after a procedure. Sometimes it’s as simple as staking out the one seat in the waiting area that’s near an outlet where I can charge my phone. I even appreciate it when I have to drink contrast for a CT scan and I have a choice of flavors, or a choice between room temperature and cold. When so much is out of my control, it makes me feel much better to be in control of something — even if it is very, very small.

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All the drugs have two names

File this under “things I sort of knew, but sort of forgot,” and “never be afraid to ask a question”: all commercially available drugs have two names, a brand name and a generic name. Yes, I did know that Excedrin and aspirin are a brand name and a generic name for the same thing, but somehow in cancer treatment, where the unfamiliar drug names were flying fast and furious, I forgot.

It was a big relief to finally realize that, although there are many drugs out there, many of which might be considered in my treatment plan, there are actually only about half the number I first thought. Doctors and patients use the generic and brand names interchangeably, so it’s helpful to know both names to be able to follow the conversation. Knowing both names is also handy when you suddenly feel nauseous and want someone to bring you the Compazine, since none of the bottles in the medicine cabinet may say Compazine.

Some of the basics:

Steroids

  • Decadron=dexamethasone
  • Deltasone=prednisone

Chemotherapy drugs

  • Alimta=pemetrexed
  • Avastin=bevacizumab
  • Folex=methotrexate
  • Gemzar=gemzitabine hydrochloride
  • Paraplatin=carboplatin
  • Platinol=cisplatin
  • Taxol=paclitaxel

Genetically targeted medicines

  • Iressa=gefitinib
  • Tarceva=erlotinib
  • Xalkori=crizotinib

Anti-nausea medications

  • Ativan=lorazepam
  • Compazine=prochlorperazine
  • Zofran=ondansetron

Note: You may hear about or take drugs that are still in clinical trials and not yet approved by the Food and Drug Administration. These drugs have only one name, such as LDK-378. The brand name is added when a drug comes on the market.

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Gene mutations in lung cancer (for the beginner)

If you have non-small-cell lung cancer, some of the most powerful information you can have is about gene mutations and their role in lung cancer treatment. With an up-to-date knowledge of gene mutations, you and your doctors may be able to manage a great quality of life for a substantial period of time, even if your cancer is advanced and incurable.

Basically, cancer happens when something in the genes or DNA of your cells goes haywire. The mechanisms that control the division and multiplication of cells get fouled up, resulting in an uncontrolled proliferation of cells. Unlike an infection, which is a foreign organism invading your body, cancer is your own body – your own cells – gone wrong.

Scientists are now able to look at the genes of cancer cells and, in more and more cases, see exactly what has gone wrong. They can see where the molecules have been rearranged so that the genes can’t do their job anymore. It’s almost like computer programmers finding the tiny bug – the line of scrambled code – that causes a whole system to crash.

Some genetic mutations (the lines of scrambled code) have a physical shape that makes it possible to target them with medicine. Some of the newest cancer drugs are designed to shut down particular genetic mutations by binding to them. Imagine a unique key sliding into a keyhole and turning a lock, only at a microscopic level.

Lung cancer is caused by different genetic mutations. You and I may have the same symptoms, but precisely what is out of kilter in your DNA may be different from what is out of kilter in mine. There are many microscopic locks, and not all of them have been discovered yet. To some of the locks, however, oncology now has keys.

The three most common known gene mutations in non-small-cell lung cancer are EFGR (epidermal growth factor receptor), ALK (anaplastic lymphoma kinase), and KRAS (Kirsten RNA Associated Rat Sarcoma 2 Virus Gene). There are other less common ones, such as ROS1, which I have. Many remain unknown.

For EFGR and ALK, there are targeted medicines on the market now, and they are more effective against cancer with those mutations than standard chemotherapy. They are oral medicines (no being hooked up to a chemotherapy pump all day). You may hear about Tarceva (generic name erlotinib), which targets the EFGR mutation, or Xalkori (generic name crizotinib) which targets ALK. ROS1 is a rare mutation and does not yet have medicines specifically developed for it, but we are fortunate that ROS1 cancer can also respond well to Xalkori/crizotinib. This is why I’m doing so well right now: we finally figured out that I have the ROS1 mutation, and I am thriving on crizotinib.

Unfortunately, these medicines do not work forever. Eventually the cancer mutates again and figures out how to outsmart them. I am told that the average patient who responds well to crizotinib gets a little less than a year of great health from it, and then it stops working. I’ve already had four months of great health. However, scientists and doctors are already working on ways to get around this resistance, and they are making progress.

This is why you need to see a specialized thoracic oncologist, especially if your cancer is advanced. It’s also why you may want to ask your doctors to take extra tissue for testing, even if you are having a biopsy at a community hospital. This aspect of lung cancer treatment is very new, and not all oncologists are even up to speed. I’ve read stories of lung cancer patients being sent to hospice because their doctors thought there was nothing else they could do, and then recovering dramatically, though not permanently, on genetically targeted medicine. If you have advanced non-small-cell lung cancer and your doctors have not discussed genetic testing with you at all, find new doctors.

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A serious illness: managing all the love

When people found out I had advanced lung cancer, in general they were wonderful. Sometimes, though, all the “wonderful” was a little much for me to take. They wanted to visit, they wanted to help, they wanted to understand what was going on – often when I didn’t even understand it yet myself.

By nature, I am an introvert. When something big is happening, I like to be alone with my thoughts, sometimes for extended periods of time. All the love and concern that friends and family were sending my direction was warm and genuine, but sometimes it also exhausted me.

For a good period of time it was difficult and painful to speak above a whisper. My vocal cords were just that irritated from the bronchoscopy and from all the coughing. I could manage a few phone conversations a day. Where possible, I wanted to save my voice for things like communicating with the doctors.

I am also a graduate student and a teacher. I’m working on a PhD in American religion, and I teach college courses at a state prison. Obviously, when I was so sick, my ability to study and teach was severely compromised, but I still wanted to do what I could. I didn’t want to be a full-time cancer patient. Sometimes I just wanted to work, and not think about my illness.

Eventually, I figured out a couple of things that were helpful for managing all the love:

  1. I used CaringBridge to communicate with most of my friends and family. CaringBridge, www.caringbridge.org, is a very simple, free blogging service for people with  health conditions. When you sign up for a CaringBridge site, you choose the level of privacy controls you’d like, so your health information doesn’t have to be public. The interface is a little bit corny (you can choose to decorate your site with flowers, nature scenes, seasonal decorations!) but the great thing about it is how simple it is. You keep an online journal, with whatever updates you’d like to share; people can leave you guestbook messages; and that’s pretty much it. There’s no comment feature, no option to contact you directly – and when I was feeling the most miserable, that is exactly the level of interaction I wanted. Using CaringBridge meant I didn’t have to repeat the same details over and over, or try to remember what I had explained to whom. Of course, if I had major news, my partner and I would try to reach my mother and my sisters by phone before posting on CaringBridge. For my wider community of friends, relatives, and colleagues, though, CaringBridge was the way to go.
  2. I tried to think of the people in my life that I always, without exception, enjoyed being around and whose presence was always soothing, never stressful. Surprise, surprise: this was a very short list, with no immediate family members on it. These weren’t even necessarily my best friends, although some have now become my best friends. Whenever possible, I put these people in charge of things. For instance, a cheery, easygoing colleague from my program coordinated all the people who wanted to help us with meals. (In our case, this included next-door neighbors who brought a casserole as well as friends on the other side of the country who called in Chinese-food orders long-distance and had them delivered.)
  3. I kept a running wish list, so when someone asked, “Is there anything you need?” I had answers. Some of the things I wanted and needed were simple and inexpensive (I coughed up a lot of clear mucus, and could never have too many boxes of tissues). Some were wild dreams (hmmm… if the summer of 2013 was quite possibly going to be my last one, was there any way I could take my daughter and her cousins on a Jersey Shore vacation?) Although it felt greedy to ask for so much, it turned out that many people in my life really wanted and needed to give. (We were given that Shore vacation, and other spectacular gifts. Along with many, many boxes of tissues. None of which went unused.)
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Double half-caf soy hazelnut cappuccino, or why no one has “lung cancer”

Just as almost no one orders a plain old “coffee” anymore, no one has plain old “lung cancer.” “Lung cancer” is what they think you may have when your doctors see some suspicious cells, a mass that doesn’t respond to antibiotics, and/or symptoms such as persistent cough, shortness of breath, wheezing, weight loss, or pain. By the time they are analyzing the tissue from the first biopsy, however, it is already something else. Additional tests, such as a PET scan and genetic testing, add more details to the picture. “Lung cancer” is actually an umbrella term for a wide array of diseases.

For example: I have probably-stage-IV ROS1-positive adenocarcinoma of the lung, a non-small-cell lung cancer or NSCLC.

To explain some of those terms:

Probably Stage IV: All cancers are classified into stages, numbered from 0 to IV. The “stage” is a measure of how far the cancer has progressed. The stage is determined using several diagnostic tools, but one of the most important is the PET scan, which shows areas of the body where cells are dividing rapidly. Stage I cancer is small and contained; Stage IV cancer has spread (or “metastasized,” to use the technical term) to other organs (or, in the case of lung cancer, the other lung).

In my case, we think the cancer probably invaded the bones of my rib cage, making it stage IV, but we don’t know for sure. I could have just broken some ribs coughing, which is something that happens. Or I could have broken ribs coughing because they were already weakened by cancer metastases. We’ll never know because a healing fracture and a bony metastasis look a lot a like on a PET scan. The only way to know for sure if I have or have had bone metastases would have been a bone biopsy, which my doctors said was too invasive for the information we would get from it. I got the “probably stage IV” at my surgical consult in January 2013, when the surgeon interpreted my PET scan results and other imaging studies.

Non-small-cell lung cancer, or NSCLC: Lung cancer comes in two major varieties, small-cell and non-small-cell. 85 to 90 percent of lung cancers diagnosed are non-small-cell. They classified my cancer as NSCLC in the pathology lab, around New Year’s Day 2013, by analyzing cells from my first biopsy under the microscope.

Adenocarcinoma: There are further subtypes of NSCLC, including squamous cell carcinoma, adenocarcinoma, and large cell or undifferentiated carcinoma. Adenocarcinoma is the most common lung cancer diagnosis in nonsmokers, is more common in women than in men, and is more common in younger people than other types. This classification also came from the pathology lab.

ROS1-positive: This is the most recent and most hopeful news about my cancer. I learned it in August 2013 as a result of genetic testing on tissue from my third biopsy. ROS1 is a genetic mutation in my cancer cells. It’s a rare one; some of the more common mutations are EGFR, ALK, and KRAS. The medication I am currently taking, crizotinib, also known by the brand name Xalkori, actually attacks my cancer at the molecular level.

Note: some of the wording in these definitions is paraphrased from information at the following useful websites: www.cancer.org, the website of the American Cancer Society, www.mskcc.org, the website of Memorial Sloan-Kettering Cancer Center, and www.mayoclinic.org, the website of Mayo Clinic. Any errors, of course, are my own!

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Lung cancer cells

Did I mention how important it is to have tissue samples, that is, some of the actual cancer cells from your body, for examination and testing?

For my first appointment at Memorial Sloan-Kettering back in January 2013, I was told to bring all my images (CT scans, X rays, PET scan) on disk, and a “slide.” I almost understood about the images: I brought them on disk, but did not realize I should also bring the accompanying radiologist reports. I completely did not understand about the “slide,” and neither did the nice people in the medical records office at my community hospital.

I tried to do what I was told. I asked for a “slide.” The nice people in the medical records office searched, and eventually produced an electronic file with pictures of my cancer cells and a written description of them. I dutifully packed it up with all my medical records and images, and brought it along to New York.

No.

What they meant by a “slide” was an actual, physical, glass slide WITH SOME OF MY CANCER CELLS ON IT. Not an electronic representation, but ACTUAL CANCER CELLS. FROM MY LUNGS.

I never would have guessed. It wouldn’t have even occurred to me that I could just pick up a glass slide with some cancer cells on it, and take it to New York on the train.

Sometimes you think you understand what they’re saying, and they think you understand what they’re saying, but it’s actually going right over your head.

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Lung cancer doctors: You need at least two

Every lung cancer patient needs a minimum of two doctors: a surgeon and an oncologist. The surgeon will analyze your imaging studies and determine whether surgery is possible; if it is, he or she will perform the surgery. The oncologist will determine what other treatments make sense for you, such as oral medications or chemotherapy.

At this point in history, the only true cure for lung cancer is surgical. Unfortunately, not every lung cancer can be treated surgically. Even if your cancer is inoperable, though, the treatments the oncologist prescribes can help you live longer and feel better. Better medical treatments are emerging every year, and a medical cure for lung cancer may be right around the corner.

Both the surgeon and the oncologist should be specialists among specialists. You want a thoracic surgeon, and a thoracic oncologist; in other words, both should be experts on the part of the body that contains the heart and lungs.

When I was first diagnosed, the last thing I wanted was a new doctor. The pulmonologists and oncologist who had treated me in my community hospital seemed like incredibly nice people who knew what they were talking about. Plus, they had perhaps just saved my life. Probably the surgeon they recommended was great, and wasn’t the most important thing to move forward with treatment right away? I was weak and tired after ten days as an inpatient, and at first I just wanted to follow the path of least resistance.

Friends, relatives, and a primary care doctor insisted that I be seen at least one major cancer center. Honestly, it felt like overkill at first, but I went to Memorial Sloan-Kettering in New York because my primary doctor said so, to the Abramson Cancer Center at the University of Pennsylvania because my family and friends insisted, and to The Cancer Institute of New Jersey because there was a satellite center near my home with a highly recommended thoracic oncologist on staff.

The big difference I noticed at first was the doctors’ experience. The physicians I saw at these centers had seen hundreds if not thousands of other patients like me. They could explain the possibilities and their recommendations in simple, clear language.

The most important reason to see doctors at big, specialized cancer centers, though, is something I didn’t fully understand until months into treatment. The big centers have better access to new and experimental treatments. Sometimes standard treatments fail, and you need an educated opinion about what experimental drugs have the best chance of helping you. Moreover, things are changing so fast in the treatment of lung cancer that sometimes the best place to start is actually with a new or experimental treatment.

Don’t be intimidated by the big cancer centers. I got help in setting up appointments, but I also found that it worked just fine to simply pick up the phone and call. Everyone, beginning with the receptionist who answers the phone, should understand that you are dealing with a life-threatening illness and need to be seen as soon as possible.

I will reiterate: you need two doctors. When you call, ask for appointments with both a thoracic surgeon and a thoracic oncologist. You may be able to see both on the same day. I was slow to figure this out, and made extra trips.

Your encounter with the surgeon will likely be brief, intense, and life-changing. In the best case scenario, your lung cancer is operable, and the surgeon should be able to essentially cure it by removing the affected tissue, although you may also have adjuvant chemotherapy before or after surgery. Lung surgery is no small thing, and the recovery time may be four to six weeks, but your follow-up with the surgeon will be limited.

Your relationship with your oncologist, however, is likely to be important for the rest of your life. You will see this person every two to four weeks while you are undergoing intensive treatment. Even if and when you reach the milestone of five years cancer-free and are considered cured, you will continue to follow up with your oncologist one to four times a year. (This is why, in my opinion, a compassionate bedside manner is optional in a surgeon but essential in an oncologist.)

When you meet a possible doctor, don’t go alone. At the beginning, my partner came with me to every appointment, and we often brought an extra friend to help take notes. At the same time, we were choosy about who came along. I deliberately didn’t bring some very close friends and relatives who were knowledgeable and would have been more than happy to accompany me, but whose presence would have heightened my churning emotions.

I loved the oncologist I met at The Cancer Institute of New Jersey. He was smart, kind, and a good communicator. I learned more in my first appointment with him than I had learned during my entire hospitalization. He was also more than willing to consult with any specialists I might see elsewhere, and encouraged me to go ahead with my consultations in New York and Philadelphia.

Shortly after that, I saw a surgeon at Memorial Sloan-Kettering. It was exhausting to travel, to navigate the New York City subway, to wait in the waiting room, to have my vitals taken and recite my medical history over again. When I finally met the surgeon, it was, in fact, a brief and life-changing encounter: she told me she had reviewed my images and in her opinion there was nothing surgery could do for me. At this point I knew “inoperable” meant “incurable” and likely “terminal.” She left the room and I wept. My partner and my note-taking friend wept with me.

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