Quarterly update and my cancer story

We drove to Pittsburgh for my quarterly appointment last Thursday. Everything went well. Nothing new on my scans. Scarring is what distinguishes my lungs from "normal" lungs. When I asked Dr. Villaruz if there are any signs of cancer, she said that if they did 100 biopsies and looked at the cells under the microscope, they could maybe find some cancer, but there's nothing visible on the scan. I do, however, have to continue taking Tagrisso or the cancer will return. 

Hearing that there are no visible signs of cancer was fantastic news! I've now graduated to scans and appointments every 4 months instead of 3. This was a bright spot for us in an otherwise bleak, depressing week.

Also, last week I started biking without my oxygen for the first time. I was a bit apprehensive, but I didn't feel short of breath, even during my speed workout. So now I'm only using oxygen on flights longer than 1-2 hours!

I drove up to Ithaca for the weekend to see grad school and running friends whom I hadn't seen in at least 5 years, We've been friends since fall of 1997! I also met up with PSU/Cornell friends who were away on sabbatical last year. Reconnecting with old friends and hiking around the campus and gorges was good for my soul.

Adam, Heidi, Esther, Richard (the latter 3 all got our degrees in Agricultural, Extension, and Adult Education)

Ithaca Falls

Upper Treman

suspension bridge on Cornell campus

Triphammer Falls

Upper Treman hike with Adam, Kristen (another grad school friend), and Heidi (below)

Lorrie and I ran hundreds (thousands?) of miles together 1997-2002, including early-morning Boston Marathon training runs in horrendous winter weather

Kai is also a professor at PSU (Cornell Ph.D.), and Annyce works at Cornell.

Treman Park

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I recently submitted my lung cancer story to a lung cancer organization. I don't think they'll share it more widely, but I'm posting it here. Those who have been following my journey over the past 2+ years already know the details. Your support means more than I can say. Newer readers of this blog can catch up on the highlights (or lowlights) here. (I also posted this on Facebook last week.)

I was diagnosed with lung cancer (adenocarcinoma) on June 14, 2022, just shy of my 50th birthday. The cancer was growing in the alveolar lining of the lungs, making surgery impossible (there was no large tumor to remove). I found out it was stage IV weeks later, upon reviewing hospital records. My doctors never told me. The cancer hadn’t spread (thankfully!), but it was all over both lungs, hence stage IV. 

I was a lifelong, hardcore runner, averaging about 30 miles a week for 33 years. I had run 5 marathons from 1998 to 2002, culminating in a 3:18 PR at Boston. I was super fit, ate healthy food, and rarely got sick (I hadn't missed a day of work due to illness for over 20 years). And I had never so much as held a cigarette. In retrospect, I realized I had assumed that my lifestyle, combined with super longevity on both sides of my Dutch family, inoculated me from the risk of lung cancer. Nothing can prepare you for the shellshock of a cancer diagnosis.

My husband, daughter, and I had moved from State College, PA to Hamburg, Germany in July 2021 for a one-year sabbatical (we are professors at Penn State). When we arrived, I could run a nearly 6-mile loop around Lake Alster at well under 9-minute-mile pace. But I gradually started getting slower and more out of breath. It got so bad that I had to stop and walk every few minutes, something I'd never done even in the most grueling races, and certainly not on everyday training runs. I figured I had a horrible case of menopause and that there was nothing I could do about it. In a few months, I went from passing up 2/3 of the runners to being passed by nearly everyone. In January 2022, I stopped running altogether because it was too exhausting and demoralizing.

I made an appointment in January or February to get checked out by a local doctor. He did every test known to humankind, except the one that, in retrospect, mattered most: a chest x-ray. One of the test results indicated I should see a pulmonologist, so I made an appointment in March. She did a pulmonary function test and said it was normal. She gave me a prescription for an inhaler. When I asked about one of the numbers from my GP's initial tests, the pulmonologist said it was impossible the number could be that low. She didn't order a chest x-ray, either. I had no idea to ask for one. The possibility of lung cancer had never crossed my mind. 

My shortness of breath grew worse, so much so that it was hard to climb more than one flight of stairs or walk uphill. I just thought this was my fate: a horrendous case of rapid aging. I told my husband so many times that I had no idea I would just suddenly lose all my physical fitness. But then I developed a mild but persistent cough, and my husband urged me to go back to the doctor. (He thought it might be TB.) In late May, I went back to my GP and insisted on a chest x-ray. A few days later, he told me the results indicated "infiltration" (I had no idea what that meant) and said I should get a CT scan. I waited a couple days because I didn't think it was urgent. 

My lungs looked so bad on the scan that the radiologist thought I had TB. It looked like cobwebs were draping my lungs. It was white and cloudy everywhere. They sent me directly to a special lung hospital, the LungenClinic, on June 9. I was diagnosed with lung cancer 5 days later. The initial suspicion of TB turned out to be a blessing, because instead of referring me to the large university hospital with thousands of patients, I was sent to a small, world-renowned lung hospital with a wonderful chief physician and attending physician. 

I realize now that it was gross incompetence that neither my GP nor the pulmonologist ever ordered a chest x-ray. I didn’t know to ask for one – that was their job, and they failed. When I emailed the pulmonologist to tell her my diagnosis and to ask why she hadn't ordered an x-ray, she replied, “I am so sorry about this- I thought that you already had a x ray examination of the lung….I misunderstood this. But it is my fault/ I should have looked at the pictures and then it would have come out that you didn’t have any examination” (verbatim quotation). I was stunned that she admitted her negligence in writing. In the USA, I could have sued for malpractice. I could have been diagnosed 3-4 months earlier, if not for these doctors’ incompetence.

On June 30, I found out that I had the EGFR mutation and could begin Tagrisso targeted therapy. I felt like I had won the lottery, which is an odd thing to say when you have stage IV cancer. A couple weeks later, I developed a painful, red, swollen vein on my foot. I had no idea what it was at the time. I was worried about it and even called my oncology team, but they didn’t tell me to come to the hospital and didn’t seem concerned. At my final appointment just one week before leaving Germany to return home, I showed my swollen foot to the hospital’s world-renowned chief oncologist, with my husband at my side. He said it wasn’t a Tagrisso side effect and that I had maybe injured my foot somehow. My husband and I both have doctorates and are assertive, knowledgeable, confident people. But when a medical expert tells you it’s nothing to worry about, you believe them. 

One week later, I nearly died from a saddle pulmonary embolism while flying from Germany to the USA. I now know that my swollen foot indicated a blood clot. This is one of the first things that nurses check for in daily hospital rounds: swollen feet and legs. Yet despite all his training, publications, and accolades, this oncologist didn’t recognize the blood clot symptoms right in front of him. 

It’s a miracle that I survived the flight. For some reason, the flight attendants were rationing the supplemental oxygen during the nearly 8-hour flight, nor did they call for any doctors or take my oxygen saturation, which was obviously dangerously low. I became so weak that I couldn’t even walk. My husband, daughter, and I held hands, waiting for the interminable flight to end. Headwinds kept delaying our arrival. When we finally landed in DC, medics rushed me off the plane. I spent the next 12 days in the ICU at the hospital closest to Dulles airport – with a horrible case of COVID pneumonia, to boot. I was initially on 40 liters of oxygen per minute, pumped into my nose through what looked and felt like a fire hose. 

The initial days in ICU were the lowest, most humiliating point in my life. I went from being a fit, healthy, athletic, self-sufficient person to being confined to a hospital bed, having to use a bedpan, and having a nurse wipe my butt because I was too weak even to lift myself a few inches off the bed. Once I could get out of bed, walking 5 feet to a chair or the bathroom left me out of breath, even with extra oxygen. 

To add insult to injury, I had to schedule a Zoom meeting with HR at Penn State to figure out how to get a teaching release for the fall semester, which was to start in less than 2 weeks. I was scheduled to teach one graduate course, and I felt like I was stuck in a phone tree from hell trying to solve this problem. No one in HR or the Dean’s office was stepping up to advocate for me or tell me my options. This horrendous experience is what I later called a failure of institutional care. 

During this time, my spirits were buoyed by the kind nurses and doctors and visits from family and friends. My husband drove 4 hours each way from central Pennsylvania to see me 3 times. I got to see my then-13-year-old daughter only once. I also had daily visits from my brother and sister-in-law or numerous friends in the DC area. Many other friends, family, neighbors, and colleagues were texting, emailing, and calling to check in on me. 

I returned home on August 10, having lost at least 10 pounds of muscle. As a runner with muscular calves and quads and toned arms, it was shocking to see my atrophied legs and arms. I was on oxygen 24/7, tethered to a long tube as I slept and walked around the house. Taking a shower felt like a workout. I was too weak to climb stairs; the upside is that I got out of doing laundry and scooping cat litter. 

Later in August and then September, I was re-admitted to the hospital twice because two different blood thinner medications had failed, and consequently I developed more pulmonary emboli and worsening shortness of breath. Every hospitalization felt like a huge setback. I despaired about how long it would take to recover from the pulmonary emboli. My hematologist finally found the right blood thinner medication and dosage, and that has kept me out of the hospital for more than two years now.

We felt so supported by our community and neighbors throughout this whole hellish, surreal ordeal. People brought us meals 3 times a week for 3 months and donated money that covered additional meals, trips to the University of Pittsburgh Medical Center (where my amazing oncologist is based), and more. Friends sent me gifts, cards, and flowers. A home visiting nurse was a huge cheerleader for me. I connected with a local woman I met through a lung cancer Facebook group, and we exchanged encouraging messages. For months, my husband did all the chores, cooking, and grocery shopping. During those first few weeks back home, a former babysitter took my daughter shopping for volleyball gear. Another friend took her thrifting for school clothes. And our neighbor/adopted grandma gave her rides to/from volleyball practices. These people are our alloparents (co-parents): we can’t raise children alone, especially when life has unraveled. 

I slowly began walking more around the neighborhood with a portable oxygen concentrator. Over time, it got easier, and I could walk further and faster. But by the following spring, I was going stir crazy because, after a lifetime of doing intensive exercise at least 5 days per week, I couldn’t do anything more strenuous than walking. I had to find another option. In spring 2023, I set up my indoor bike and found that I could bike while using the portable concentrator, without my oxygen saturation dropping too low. I eventually began biking outside (carrying the portable as a backpack). 

Then in April, I made my first appointment with a personal trainer at a local gym. I had never done weightlifting before, but I’d been reading about how important it is for post-menopausal women. And it seemed ideal because I could modulate the intensity level and use my portable. I began at less than zero. I had lost so much muscle. After about 6 weeks of meeting with personal trainers, I began lifting and doing strength workouts on my own, gradually adding more weight every week. This gym and the trainers have been a godsend.

Where am I now? After 2 years and 4 months, Tagrisso is still keeping the cancer in check. I’m well past the point at which resistance often develops (~18 months), so the unanswerable question is how much longer it will continue to work. I have a CT scan and checkup every 3 months in Pittsburgh. I will always be in treatment. 

I’ve regained a huge amount of lung function, and my pulmonary function tests show that I’m now within normal range. Due to permanent scarring, I still need oxygen while flying at high altitudes and while biking (although I biked without it yesterday for the first time and felt fine!). But I no longer need it when walking around town (even uphill) or while lifting! I’ve worked my way up to intermediate level for all my strength training exercises and am hoping to break 200 pounds in the deadlift within the next 6 months (I'm at 180 now). My upper body is stronger than ever – so much so that I no longer fit in some of my shirts! It feels good to have something to celebrate.

Cancer and anxiety about the future are still ever-present, but cancer is no longer the first or last thing I think about every day. I’m living a full, normal life. Other than having stage IV lung cancer, I’m in perfect health.