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Being in the Right Place

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Sometimes a notion pops into my head out of the ether, and I follow it. It might take the form of an impromptu decision to turn left instead of right, or an urge to contact someone with whom I haven’t spoken in ages. I used to dismiss such instincts, but I’ve learned to follow them. Sometimes I end up being in the right place for something … or someone.

This week it happened again.

I was on my way home from Seattle with son David when I suddenly remembered our local blood center was nearby. David and I used to donate together as often as allowed before I was given a permanent deferral due to my metastatic cancer. David wanted to donate, so I dropped him at the front door and parked to wait.

I worked on a writing project, periodically opening and closing car windows to adjust the temperature. Once I overheard fragments of a conversation in the car next to me as I was closing my window, but from my compact SUV I couldn’t see face of the sole occupant.

When I stepped out to check on David, who was taking longer than usual, I noticed the guy in the neighboring car was wearing medical scrubs. When I was walking back to my car (still sans David), I remembered who he was: he was the nurse who had given me my permanent deferral for metastatic cancer last year. He’d handled my blood donation several times.

I walked over to the driver’s side of his car and said hello. He looked up, his face brightened as he recognized me, and we exchanged pleasantries.

Then he told me he’d just had a phone call from his best friend, who today learned she had colon cancer and was waiting for biopsy results on possible liver metastases. He didn’t know how to handle the news.

We talked until he had to go back to work. He called me the next day and we talked for an hour about cancer, loss, and what do you do with news like that?

“Funny,” he said. “I’ve been thinking about you for some reason over the past couple of weeks. It’s almost like you were meant to be there after I got that call.”

And that’s why I follow my instincts.

Telling My Child of My Cancer

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When I first heard my lung cancer diagnosis in May 2011, one of my gut reactions was, “How do I tell my kid?”

I had better reasons than most cancer patients to be wary of telling my adopted son about my diagnosis. Yes, 25-year-old David was on the autism spectrum, which among other things meant he had issues with processing auditory inputs, deciphering the meaning of communications, working memory, and interpreting emotions. However, a more daunting challenge for him was personal history: his birthmother (my cousin) had died of brain cancer when he was three, and her eldest brother had died of the same cancer in late 2009.

How do you tell someone he might lose a second mother to cancer?

I hesitated to say anything to David before the diagnostic process and staging were complete. Struggling with my own emotions and denial, I felt I had to be able to solidify my perspective before I could present my situation in a hopeful manner to anyone else. For days I fretted about how to approach this task. Even when I was hospitalized with obstructive pneumonia immediately after my diagnostic mediastinoscopy surgery, I still said nothing about cancer to David. I told myself I didn’t want to disrupt his spring quarter finals.

The truth was, I still didn’t know what to say.

Once David was done with his school quarter, however, he could not avoid seeing me around the house in clear discomfort, or seeing Dad flush the PICC line in my left arm every night. I doubted even his generally internal focus could miss recognizing that something was wrong with me.

Finally, my husband Gerry and I asked David to join us in the living room for a family discussion. I feared that would trigger anxiety for him, because such meetings rarely happened in our house, but he seemed calm. I fought to stay tear-free while talking.

“David,” I said, “I have lung cancer. It’s aggressive, and advanced, but the doctors think it’s curable. I’m currently on antibiotics for pneumonia caused by the cancer. When I’m recovered from the pneumonia, I’ll start chemo and radiation, which is considered aggressive cancer treatment.”

I watched his reaction carefully. David quietly shifted in his chair while I talked, and scanned various points in the room — his standard conversational behavior. So far so good.

Gerry spoke next. “We want to be honest and open with you about this. We won’t lie to you. Do you have any questions?”

He did ask some general questions. We answered each one truthfully, but briefly. He sat silently for a minute, then seemed to reach some sort of decision.

“You’re treating the cancer aggressively?”

“Yes.”

“You’re not giving up?”

“No.” A beat. “Are you OK with this, David?”

He looked at the ceiling, then back at the floor.

“I’m OK. Besides, I already know how to find new parents.”

I burst out laughing. He looked at me and flashed that charming grin. He was, indeed, OK.

—————–

Today, over two years later, I asked David what he remembered of that day. I was hoping for confirmation of my memory and interpretation of events. I was surprised to learn that David only remembered he was disappointed.

Apparently David had tried to communicate something that day, and I didn’t get it right. He wanted me to use a recognizable phrase as a code word if my cancer took a turn for the worse. The phrase he chose was, “It’s a trap!” I got the science fiction reference — it was spoken by Admiral Ackbar in “Star Wars VI: Return of the Jedi,” when the heroic rebels were hit with a surprise attack by the evil Empire — but I didn’t capture the proper inflection. I now have an assignment to rewatch the movie so I can practice Admiral Ackbar’s pronouncement properly. “It’s a TRAP!”

It’s good to have goals in life. And a kid who can surprise me.

A Blue Sky Cancer Cure

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New treatments for cancer are being discovered at an ever increasing rate. Unfortunately, no single treatment can yet successfully treat all cancers that arise in the lungs, much less cancers that arise in all parts of the body. Cancer is not one disease, but many, featuring many types of cancer cells with different (and sometimes several) mutations in those cells, originating in various parts of the body with different cell structures, and threatening different bodily functions. A single tumor can even contain more than one type of cancer cell. There are as many different cancers as individuals who have cancer.

Here’s a science fiction concept:

Let’s invent a artificial intelligence device that enters the body via a single small injection, travels through the blood stream, locates all cancer cells, determines their characteristics, surveys them to determine how many are susceptible to drug A, drug B, surgery, radiation, or nutritional supports, then reports out to the doctor on the optimal treatment for this individual’s cancer.

Or, better yet, the device completes the cell inventory, instructs the immune system how to eliminate each type of cancer cell without harming healthy tissues, and reports out to the patient and their doctor on whatever assistance the immune system needs to do it. Maybe an alert shows up on the patient’s wristband or Google glass and reads, “Drink 0.25 liters of green tea with 3 ml lemon juice daily for 2 weeks, avoid shrimp, eat an oreo before bed, and get radiation treatment for your liver.”

Yeah, that should be easy.

Yes, Sheldon Cooper, that’s sarcastic.

NTRK1: a new oncogene and target in lung cancer

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A new driving mutation in lung cancer called NTRK1 has been found by researchers from University of Colorado and Dana-Farber Cancer Institute. It joins the family of driving mutations like EGFR, ALK, ROS1, and RET. What’s particularly interesting for this mutation is that an exisiting drug appears to target it (in preclinical studies). Note the linked article does NOT say the mutation is specific to NSCLC.

I’m hopeful we’ll have an approved FDA treatment for this mutation more quickly than usual (though I’m not holding my breath).

NTRK1: a new oncogene and target in lung cancer
http://www.coloradocancerblogs.org/ntrk1-a-new-oncogene-and-target-in-lung- cancer/

The Basics of PD-1

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Several clinical trials for lung cancer (as well as other cancers) are pursuing therapies based on the PD-1 pathway of the immune system. These trials can usually be found on clinicaltrials.gov by searching with keywords such as PD-1, PDL-1, or PD-L1. Sometimes these therapies are referred to as anti-PD-1 or anti-PD-L1.

PD-1 (PD stands for Programmed Death) is part of an immune system “checkpoint” pathway that, among other functions, helps turn tumor suppression on or off. PD-1 is actually a protein expressed on the surface of certain cells in our immune system; it is NOT a mutation, but rather something inherent in everyone’s immune system. The cells of interest in these trials are activated T cells, but PD-1 is expressed on other types of cells, too. The PD-1 protein is a receptor, which means another molecule can bind to it.

PD-L1 is a protein of the surface of some (but not all) tumor cells. It is a ligand of PD-1 (hence the “L” in its name), which means it binds to the PD-1 protein. When PD-L1 binds to PD-1, it tells the immune system to ignore the tumor cells. PD-1 has one other known ligand (surprisingly named PDL-2).

PD-1 and PD-L1 therapies aim to blockade the PD-1 pathway so the immune system can better attack cancer tumors. The drugs used are designer molecules that bind to part of the PD-1 pathway and block its activity. Some drugs bind to PDL-1 so it can’t bind to PD-1. Other drugs bind to PD-1 to prevent ligands from binding to it. Both approaches aim for the same effect: keep the PD-1 pathway from telling the immune system to ignore tumor cells.

Not everyone responds to PD-1 pathway therapies. Early trial results show lung cancer patients had response rates on the order of 10% to 18%. Researchers are studying whether biomarkers — proteins such as PD-L1 on the surface of immune system or tumor cells — might indicate which patients will respond well to PD-1 therapies. That is why some trials (but not all) require a biopsy for testing before accepting the patient into the trial.

Since part of the immune response for suppressing tumors involves inflammation, participants in trials based on the PD-1 pathway often find their tumors will grow somewhat when they first start the therapy. A few lung cancer trial patients experienced serious or fatal pneumonitis, a lung inflammation.

PD-1 therapies are promising enough that at least four drug companies (Bristol-Myers Squibb, Roche/Genentech, Medimmune and Merck) are pursuing them in lung cancer trials. Because they modify the immune system, the hope is that these drugs will continue working longer than targeted therapies do.

Please let me know if you find this sort of article helpful.

Edited 2013-09-12 12:53 PM PDT to add information.

A Measure of the Seasons

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Today is our family’s Cider Making Day, one of several at our home.

Apple harvest in our Western Washington home orchard runs August to October. We have six varieties of apples that ripen at different times. Yesterday hubby Gerry and son David harvested about 60% of our Elstar and 50% of our Liberty apples, and collected apples dropped from the Chehalis and Spartan trees. About 100 pounds of these will go to the local foodbank. We’ll use the rest for cider and storage.

The first step in making apple cider at our house is washing off kaolin clay, a natural mineral Gerry sprays on our apples to make them less attractive to apple maggots and coddling moths. Next, we quarter the apples and cut out any bad spots (some maggots and moth larvae still sneak in)—this takes the two of us two to five hours, depending on how much cider we want to make and how much trimming the apples need. Gerry and David then press the cider outside in a custom-built wooden cider press. The product tastes amazingly like eating a fresh, tree-ripened apple. We’ll have gallons to last us through the coming year.

Washing apples for cider

The cider press

Making apple cider is a measure of the seasons in our house – we’ve been doing it about 15 years, since the trees Gerry planted in 1994 started bearing enough fruit. Over the past 29 months, it’s become a measure of my cancer seasons as well.

In September 2011, I had recently finished my first line of treatment (seven weeks of concurrent chemo and radiation). I was tired and weak. Instead of standing at the sink to cut apples, I had to sit on a stool, and I only lasted about an hour or two. I had a recurrence in October 2011. It was a terrible shock.

In September 2012, I had recently finished my second line of treatment (five months of chemo followed by six weeks of radiation). I was fatigued, but able to soldier through an entire batch of cider apples while sitting. I had a recurrence in September 2012. It was an unpleasant surprise, but I had a plan, and entered my current clinical trial shortly afterwards.

In September 2013, I’m in my third line of treatment (just finished my tenth month on Xalkori). My legs, feet and hands are achy from cumulative neuropathy and edema from treatments past and present, but I have energy and can once again stand at the sink and enjoy cutting apples while discussing matters great and small with my mate for hours. My next scan in is October. If I have another recurrence (and it will happen eventually), I know I’ll either have local treatment of the metastasis, or switch to another trial at University of Colorado.

Next year, my family will make apple cider again. Life goes on.

Coping with Side Effects

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I have a 20-pound lifting limitation on my right arm from radiation damage. My right brachial plexus — the nerve bundle that controls the right arm — took a full dose hit last summer.

I take an engineering approach to such limitations. I find myself looking at boxes I need to move and thinking, “If I take out these books, then the box is only 40 pounds, and if I divide that by two arms …”

I do not tell my radiation oncologist about these moments.

I hope he’s not reading my blog today.

Still Dancing — OK, Walking — with NED

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My August 12 PET-CT scan still shows No Evidence of Disease (NED). Woohoo! Having completed 10 cycles on Xalkori without progression, I now go to Denver at 8-week instead of 4-week intervals for my ROS1 clinical trial, and have labs drawn at my home clinic between Denver visits.

I have muddled my way through hamstring rehab and am back to VERY basic strength training with light aerobic exercise on the recumbent bike and treadmill. The best description I can find for my state of fitness is “wimpy.” If I walk one city block here at sea level at a moderate pace (about 2.5 mph), my breathing speeds up a good bit and my heart rate rises to 140! I have to use an oxygen compressor to walk in Denver without gasping or stopping after 500 feet. The persistent Xalkori-induced edema isn’t helping.

The physical therapist tells me it will take a looooong time to rebuild the muscles that have atrophied due to disuse and cancer treatment. I made sure she gave me clear guidelines about pacing my recovery, because, as you all know, I’m SO good at taking things slow.

I’ve developed something called “trigger finger” in my hands, and the oncologist says he doesn’t think it’s related to taking Xalkori (although edema might play a role). Because of this and some other issues, I’ve scheduled an appointment with my primary care doctor to discuss whether my thyroid is starting to misbehave in response to the radiation dose it received last year. However, other non-cancer conditions could cause my symptoms, too. Rather than diagnose myself (I know, I know — why stop now?) I’ll hear what my PC doc thinks.

So, here I am, just taking life slow, glad I’m around to enjoy the magnificent Pacific Northwest summer. I’ll be speaking at the World Science Fiction Convention in San Antonio this year over Labor Day, then mostly hanging around the house attempting to declutter and find the floor of my den once again.

Wait …

Wouldn’t it be wonderful if I could actually HIKE somewhere next year? Or take a cruise in the Mediterranean? Or …

Moves in the Cancer Endgame

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My dad taught me to play chess when I was small. I learned the game fast, and could soon beat other kids older than me. However, when I faced an opponent who was much more skilled than I, my attention eventually wandered. I lost the endgame because I’d lost patience.

A chess game transitions to the endgame when few pieces are left on the board. Whatever strategy positioned pieces prior to the endgame becomes irrelevant. The pawns, which initially were the least powerful pieces, become important.

Recently I was playing a much more highly-rated player online (thank you, Nancy Kress) and realized something in my attitude had changed: I had developed patience for the endgame. Even though I had been outmaneuvered and did not possess enough pieces to win, I kept looking for my next move. I wanted to keep the game going as long as possible.

Metastatic lung cancer is a tough opponent, and the odds favor it winning. Several powerful treatments didn’t finish it off. I haven’t many therapy pieces left. But I keep searching for my next move, even if it can’t give me victory. Clinical trials are now my best pieces in the cancer endgame. I want to keep playing — and living — as long as I can.

Cancer taught me patience for the endgame. Maybe someone else will learn from how I played.

Insurance Considerations for Travelling Cancer Patients

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Over the past 40 years, I’ve travelled to all seven continents and most of the US states. I didn’t feel much like travelling most of the time I was on cancer treatment, but now that I’m feeling fairly normal on Xalkori, I’ve begun to venture out again.

When I buy expensive tickets on common carriers (airlines, cruise ships, train), I buy travel insurance. Before I was diagnosed with lung cancer, I bought it primarily to cover non-refundable payments in case I had to cancel due to illness or family emergency, or to cover lost luggage and medical expenses abroad. Now that I’ve got metastatic cancer, and I’ve learned how much quality of cancer care varies, I’m more concerned with covering expenses if I have cancer-related problems while on a trip.

The CDC has a good page that summarizes the three types of insurance for travelers: travel insurance, travel health insurance, and medical evacuation insurance. Here’s what I’ve learned from the travels of myself and others.

Travel Insurance and Travel Health Insurance

These policies are usually purchased for a specific trip, and cover the following travel medical problems, along with baggage insurance and other things.

Trip cancellation provides reimbursement for non-refundable trip payments and deposits if I must cancel the trip before it starts. If the trip is expensive — say, a two-week cruise — and purchased many months in advance, I want my deposit and payments to be reimbursed if changes in my treatment plan (say, radiation for a new met) force me to cancel my trip.

Trip interruption provides reimbursement for non-refundable trip payments and out of pocket expenses if the trip is interrupted after it starts. If I have a health problem on the cruise, and the ship departs without me while I’m waiting on a doctor or hospital, I will get reimbursed for the extra airfare to catch up with the ship after treatment, and meal expenses I had to pay out of pocket while I’m off the ship.

Emergency medical and dental pays medical or dental expenses incurred on the trip. Cruise ship doctors are pricey, and expect payment at time of service. Medicare and Medicare supplements usually do not cover medical expenses incurred outside the USA.

Emergency medical transportation arranges and pays to medically transport me to an appropriate medical facility when I need care, and get me home after I’ve received care. More on this under Medical Evacuation Insurance.

Frommer’s has compiled a list of companies that offer travel insurance and travel health insurance. The US State Department has another list of companies that provide coverage for overseas travelers. AAA-hosted trip usually book me through Allianz, and I’ve booked through Allianz myself online.

Medical Evacuation (Medevac) Insurance

If I become severely injured or ill while away from home, I might need an air ambulance to transfer me to a major medical center, or even my home hospital. Such transfers are EXPENSIVE. A friend with cancer paid $20,000 to be flown by air ambulance from Seattle to Kentucky. If you’re overseas, the cost could be $100,000 or more if you’re in a remote area with little medical care available. Travel insurance policies often don’t provide sufficient coverage for this.

Medevac policies can be purchased separately or in combination with travel insurance. Some Medevac insurance providers have their own network of specially-equipped airplanes whose flights are not restricted to airline timetables and routes; other providers are simply brokers that make arrangements for evacuation with contractors. Most medical evacuation insurance companies offer policies that cover the insured on all trips during a set period, be it short- or long-term. Annual policies are typically around $200. Terms and availability vary from carrier to carrier.

Some carriers that offer Medevac insurance are listed below. I don’t have personal experience with any of them; this list is just offered as a starting point for readers.

Allianz
Global Rescue
IMG
MedjetAssist
TravelAssist Network
Travel Guard MedEvac Plan
WorldMed

Buyer Beware

Here are a few lessons learned from my own experience:

1. Read the insurance policy to be sure my specific travel situation is covered. Some policies will allow me to cancel within a short period after purchase if I discover my situation isn’t covered.
For my first trip to Denver for a clinical trial, I bought Alaska Airlines travel insurance through what was then AccessAmerica (now Allianz). The full policy was emailed to me after I bought it. Good thing I read it immediately: it didn’t cover travel for medical treatment! Fortunately I was able to cancel and get a full refund within 10 days, if I hadn’t already left on the trip. Without travel insurance, however, I would have to forfeit my cheap non-refundable ticket if the clinic changed my appointment day. I was able to reschedule a non-refundable flight for free once by playing the cancer card, but I wouldn’t want to rely on that approach.

2. Disclose pre-existing conditions (lung cancer!) and check for pre-existing conditions waivers that might disqualify me for coverage.
Because I have lung cancer, AAA travel agency told me I had to buy non-refundable travel insurance at the time I made my initial deposit on a cruise, months in advance of the trip. If I had waited to buy the insurance, any claims related to my lung cancer would not be covered. My healthy son was able to wait to buy his insurance until he made his final payment for the cruise.

3. Check for dollar limits, deductibles, and terms regarding medical evacuation.
Be sure the coverage limit is high enough to pay for evacuation from wherever I plan to travel. Ask what air carrier the insurance company would use for evacuation from the travel location—they may not have contractors in all countries. Check the policy to see who decides whether I’m sick enough to qualify for air ambulance, and whether I would be transferred to “the nearest appropriate hospital” or a hospital of my choosing.