No Drugs and Low on Blusher

February was an unsettling month. I had an appointment with my oncologist early in the month, and he was delighted to give me the news that my cancer has a particular genetic mutation, epidermal growth factor receptor (EGFR) that makes it amenable to treatment with a drug named Tarceva. Tarceva slows the growth of the cancer cells. Thus, any lingering cancer cells which might be biding their time before once again becoming active will have their plans delayed.

Yippee, you would think, as I did. Well, as I did right up to the time that the pharmacist called to tell me that my copay for the first month of the medication was over $2200. A subsequent call to my health insurance to make sure I correctly understood the drug coverage confirmed that by the end of this year I'd be paying about $10,000, and it would start all over again in 2015 and every year thereafter. And keep in mind that this is in addition to whatever my physician and hospital bills might be, which thankfully have a $4000 annual out-of-pocket maximum, or any other prescriptions I might have, such as for my rheumatoid arthritis. There is no out-of-pocket maximum in drug coverage.

At the pharmacist's recommendation I applied for assistance from a foundation that underwrites drug coverage for people like me.

While waiting for a decision I decided to learn everything I could about the drug, and indeed about what my future might look like. The doctor had already told me that only about 20% of people with my kind of cancer make it to 5 years. (And every time any of the doctors would say such a thing, they were quick to add that "statistics don't have anything to do with an individual patient." And furthermore, those numbers, by definition, are based on patients who were treated before the latest and greatest treatment breakthroughs. Yeah yeah, I get it.) When I had my false alarm in December I was all over the internet, trying to find information about "recurrent lung cancer" and "prognosis recurring lung cancer" and every variation, without much success. I think the medical profession really doesn't want us to know.

I read the studies on the Tarceva site. They were mostly over my head, using acronyms and obscure medical terms I didn't understand. I opened a second window in my browser and slowly and methodically did a search for every term I didn't understand, and eventually I cracked the code.

In all my efforts to learn more about my own possible future, I was using the wrong search terms. Not "prognosis," but "OS," for Overall Survival, or "HR" for Hazard Ratio, a measure of how frequently and/or quickly the 2 comparison groups exhibit the symptom(s) being studied. Not "recurrent lung cancer," but NSCLC for "Non-Small Cell Lung Cancer," and "PRS" for "Progression-Free Survival." Not "treatment for recurring cancer" but "second (or third) line treatment NSCLC." And finally, "maintenance treatment" to describe the limited options available to slow the progression of the disease.

The first thing that popped out about Tarceva is that there are many, many nasty side effects. I totally understand that a condition must be listed as a possible side effect no matter how rare the occurrence, but it doesn't take a lot of digging to figure out the occurrence rate. Many of the serious side effects occur with alarming frequency.

But the most important and profoundly sobering finding was that Tarceva's effect on recurrence is measured in mere months. The median duration between the end of initial treatment ("first line treatment") and recurrence (PFS) in the control group -- the patients not taking Tarceva --  is 4 months; the median PFS in the drug group is 6.8 months. Let me repeat that: 4 months vs. 6.8 months.  Yes, it's statistically significant. But is it meaningful? Do I really want to take such an expensive drug in order to buy myself a couple of extra months? I've already beaten the odds and have passed the median time by which the cancer could have come back. If the results showed 4 vs 6.8 years, maybe. But months? I don't think so.

The foundation finally contacted me, and I was awarded a $7500 grant. That would bring my own cost to $2500 for the rest of 2014, plus another $2600 in January of 2015 before I could reapply for assistance. I decided against taking the drug. My doctor was frank in his belief that this is not a wise choice, and also fully supported my decision about treatment.

Here's the thing: the overall survival rate for all of us is zero percent. We're all going to die. We all know it, sort of, and most of the time most of us don't give it much thought. It's something that's a long way off and doesn't have anything to do with the fact that tomorrow's trash collection day and the day after that I have a dental appointment and today it's raining.

Odds are cancer will kill me sooner or later. I say that knowing that I'm breaking the unwritten rules: cancer  patients, or indeed anyone with a potentially fatal disease, are supposed to Keep a Positive Attitude and be determined to Beat This Thing.  I do have a positive attitude and I'm willing to do a lot to keep myself healthy. But during the False Alarm Episode in December, I came to terms with the idea that I probably won't live to 91, as my mother did, and making it to 71 is certainly possible, but not probable. And you know what? That doesn't freak me out. After watching my father lose himself into the horror of Alzheimer's, I'm much more afraid of Alzheimer's than I am of cancer. And watching my mother die with some warning and several weeks of hospice care, the gathering of the daughters and grandchildren and great-grandchildren and friends and nieces and nephews, I gained a new-found respect for the kindness of advance notice.

There are so many things I regret about my life, but none of those could be changed if I live to be 100. And even with those regrets, I feel fully blessed. My daughters are the most amazing, beautiful, intelligent, loving women I could ever imagine. I have a large circle of fabulous, loving friends. I love my home, I'm living in a community that feels right for me, and every February the garden wakes up and things magically come alive. And in a turn of events I never could have foreseen and after decades of estrangement, my older sister and I now speak on the phone several times a week. It's brought me much joy and has allowed me to reclaim so much of my childhood.

Our world is filled with many tragedies. Children dying in war, young men of color incarcerated at unspeakable rates, women and children sexually assaulted, our food supply contaminated by corporations. The homeless, the lonely, the desperately poor, the victims of genocides that continue endlessly in too many places -- those things are tragedies. Dying of cancer in my 60s is not a tragedy.

Low on blusher

Women who wear makeup are accustomed to that point when the bare spot appears in the middle of the pressed powder. Whether it's eye shadow or face powder or blusher, it's the warning bell that tells us to go buy some more. My blusher has reached that point. Events like this make me wonder how much time I have, and if I can squeeze out enough blusher to last me as long as I continue to care about such things. As of this writing, I've not replaced it.

This just in

My much-anticipated appointment with my oncologist was on Monday, January 6. I was in pretty good shape for most of December, trying to get my head around the idea of my mortality, but by last weekend I was spiraling down. That hard-to-grasp concept of, "Really, someday I'm going to die," was shifting from theoretical to awfully damned specific, and it wasn't a pleasant journey.

Sherri picked me up and went with me to the appointment. As with some of the appointments last year, I wanted someone with a clear head to be there, taking notes and reminding me of what questions I ought to be asking. About the only question I could hold in my head was, "How bad is this?"

I need to set the scene. For the last year Dr. K and his group were in two office locations, one semi-permanent and one clearly temporary, while they built a new office building. My appointment was on the very first day they occupied the new building. I figured there would be some missteps and some things that didn't work quite as planned. Boy oh boy, was I ever right. Dr. K was the only physician on site, and their internet and phones were down. The receptionist couldn't access the appointment book or accept my copay. The nurse warned me that the doctor wouldn't be able to access my records or the results of my recent PET scan and blood work. And for reasons unknown but not related to the other system failures, the nurse couldn't take my temperature with the electronic thermometer. Unfortunately, the blood pressure monitor was working and I clocked in at an alarming 159/101. I was trying to maintain my air of positivity but was heartsick at the idea that I might have to come back later, that I wouldn't learn anything about what was going on with me.

When Dr. K came into the exam room the very first thing I said was that I was really worried. "Why are you worried?" he asked. I mumbled out something about knowing that such a rapid recurrence couldn't be good news. "But your cancer hasn't returned!" he responded.

Never mind

It's true. My cancer hasn't returned. Back at the beginning of this process a year ago, the first PET scan showed "activity" in my upper chest wall and I had to go in for more biopsies. Those biopsies showed no cancer, I simply have a general inflammation in that area. By comparing the recent PET scan with the two scans I had last year, they were able to conclude that there's no change. The CT scan was merely showing something in the same area, but the PET scan shows it's nothing new. Furthermore, my chemo markers actually went down between the two blood draws in late November and late December. While it's still a bit of a mystery why I'm showing any markers at all, Dr. K said that if I had an active tumor the markers certainly would not have gone down. 

He had reviewed my test results before my appointment, so knew the news. While we were talking the internet came back on and he was able to show me the write-up from the scan, as well as a cool graph of the history of the chemo markers. They've bounced around since last summer, never getting very high but never quite to zero.

Sherri and I were laughing and high-fiving and generally acting silly, which was exquisitely appropriate.

Dr. K will follow me closely for a while, seeing me monthly, and I'll have another PET scan in a few months. But for now all is well, which is a perfect place to leave things for now.

Here we go again

When I completed treatment in early August I assumed I was through with this neglected blog for a loooong time. While my wonderful oncologist made clear to me that the 5-year numbers weren't good, he was also effusive in his praise of my wonderful attitude and emphasized how important it is to keep a positive attitude.

Hey, Positive Attitude: I am thee and thee are me. Just as soon as the cancer researchers isolate the Marcee Factor, they'll be compounding it and making big pharma bucks out of it. In the meantime I'm here to testify that all the good thoughts in the universe can't necessarily control the frenzied multiplication of cancer cells.

I'm writing today to tell you that a positive attitude does not necessarily result in a positive outcome. I'm here to tell all of  you who have been told that your cancer has returned haven't, by definition, failed.

Yes, my cancer has returned. When I tell people they often ask, "In the same place?" Well, no. The lobe of my lung that had cancer was removed, so, there's no longer that lobe in which the cancer can return. There are, however, 4 lobes left, and one of them showed up in the CT scan as having another tumor.

Here's where we are right now: In advance of my first official follow-up visit with Dr K, I had a CT scan. When I had my appointment with him on Nov 25 I fully expected that the information imparted would be about what the long-term follow-up would be. Six months? Four months? Annually? I was totally NOT expecting that the information would be that the CT scan showed a tiny tumor in the upper right lobe.

At this moment I'm in yet another Waiting Mode. Dr. K wanted to wait a few weeks before more tests. Honestly, I was so shocked at the test results I didn't ask any questions. As with the initial diagnosis in January, I just blinked and said, "Okay."

I'm scheduled for a PET scan and blood work on Dec 30, and an appointment to review the results with Dr. K on Jan 6.

It takes neither a cancer specialist nor a rocket scientist to know that this isn't good news. I've poked around on the internet and have found a dearth of information in response to the search term, "rapid recurrence of cancer after treatment" or any of its variations.

But wait, there's more

On the same day as my appointment with Dr. K, I returned home to a voicemail from my sister Joyce. She'd been experiencing weight loss and increased fatigue and I'd been among several people who'd been urging her to get in her doctor's face and demand answers. The sound of her voice on the VM told me it wasn't good news.

You can't make this s**t up. Yes, her doctor had ordered tests, including a chest X-ray. On the very same day I learned that my lung cancer had returned, she learned that she had lung cancer. The news since then has been downhill. The PET scan showed "activity" in her lung, a lymph node in her esophagus, a lymph near her collarbone, in the peural cavity, and in her stomach.

Smart lady and smart husband, they departed today for a 3-week cruise into warm climates. When they return in January she'll have whatever tests are deemed necessary to determine the extent of the cancer and shape the treatment. I remind myself, and my sister, that I had a PET scan early on that also showed hot spots that turned out not to be cancerous; I can only hope she's as fortunate.

More later

I'll post again when there's more news. I've re-read my entries from my first go 'round with this disease and have been stunned at the lack of detail. My experience was so much more interesting, difficult, and nuanced than what was posted. Ever seeking the bright side, I'll try to catalog a more comprehensive account this time.

Treatment Aftermath

I'm just not the kind of person who should try to have a blog. There's always something different I want to be doing instead of updating my blog.

While a lot of time has passed since the last posting, I can sum it up pretty succinctly: I made it through 28 radiation sessions and 4 more chemo sessions with relatively few and minor side effects.

There. That's been my life from July 2 through August 9.

Brena arrived on July 15 with the single purpose of feeding me. I didn't have much appetite and even less energy to cook for myself, so her mission was to tempt me with wonderful tasty, healthy foods. And then clean up the kitchen after. Oh, and tend the garden and general housekeeping. Plus grocery shopping. She's flying back home this afternoon, and it's going to be strange and weird and lonely when she leaves. We've had a wonderful time together, and it's been a great gift to me. I know I wouldn't have made it through these times so well without her. 

Radiation was at 1:00 every day Monday - Friday. In the beginning they gave me 3 almost invisible tattoo dots on my breastbone and one in each armpit. I had to remove my clothing from my top half and put on a hospital gown, then lie on the table on my back with my hands holding on to 2 conveniently-placed handles above my head. The LINAC machine came complete with a perfectly straight laser light and the nurses would move me around as necessary to make the light line up with the 3 tattoos. Once I was in position they left the room and the radiation procedure began. I couldn't feel a thing, and soon became so comfortable with the process that sometimes I'd doze off for the 15 minutes. I always pictured the Goddess of the Universe sort of waving her hands over me, filling me with healing waves of energy. [Okay, I know there might be some of you out there who think that's strange, but I'll get through this my own way.]

As will come as no surprise to most of you, I immediately set about making my own hospital gown, modified to provide better "coverage" yet still allow the nurses to line up the dots. I made it out of some fabulously bright and happy fabric that Sherri donated to the cause. The nurses and even the doc said I could make a fortune by making and selling such gowns. Yeah, I've heard that a million times and no one seems to understand that I would never want to turn my hobby into a business, plus I'm much too old to spend all day every day hunched over a sewing machine. I am thinking about selling the pattern, however.

Back to radiation treatment. There was a very long list of side effects in the literature they gave me before treatment started, so I was prepared for things to be bad. Plus I'd been warned that adding in 4 more chemo treatments while doing radiation would be very hard on my body.

Well, I sailed through the whole thing with only the most minor side effects, other than fatigue. Oh. My. God. I've never slept so much over such an extended period. I'd usually sleep about 10 hours a night plus a 2-hour nap in the afternoons, and maybe slip in a morning nap on the weekends. But while I was awake I felt pretty well. A few times I ran into people I hadn't seen in a while who didn't know about my diagnosis and treatment, and they'd always say how great I looked. (Lose 20 pounds and everyone thinks you look good!) They were always shocked when they learned what was going on. In other words, I'd feel just fine until I hit the wall, and then I had about 4 minutes to make it to bed or I'd be asleep on my feet.

And then suddenly it was all over. My final chemo was on Monday, August 5, and the final radiation was on Friday, August 9. I still sleep as much, but each day I feel a little stronger, with a little bit more energy between naps.

Now we wait. I'll periodically have CT scans to check to see if the cancer returns. I'm optimistic and confident that it won't. The entire experience has gone better than I was warned it would. Actually, I feel like I've been encased in a bubble of miracles, from fantastic doctors and nurses to not losing my hair to not even missing much work to having a wonderfully supportive boss to the unending love and support from my friends and family.

So I'm signing off for now -- hopefully for good.

Sending my love to all of you who have held me in your thoughts and prayers and good wishes and love --

Marcee

Radiation Girl

Radiation therapy officially started on Tuesday, July 2. I was introduced to the machine, called a linear accelerator (LINAC), on Monday. The LINAC doubles as a CT scan, so what they were doing on Monday was taking it through its paces with CT scans, to make sure everything was targeted right.

It's really quite an interesting technological process. After all the CT and PET scans I've had, the doctors have a good picture of my insides. A computer program processes all those images and determines the best angle and shape of the x-ray beams. The "dry run" on Monday was to make sure the computer did its job right.

This is the best image I could find of the LINAC. I lie on the table and the machine rotates around me, stopping at 8 locations (including below me) and zaps me maybe a dozen times from each location. When it's above me I can watch the lights that represent the x-ray beams change shape; then there's the buzz of the x-ray, followed by the lights changing shape, then another buzz, and so on. It takes about 15 minutes for the complete process.

The side effects will take a while to kick in, so for the moment I have no physical reaction. Some time in the second week my skin will start to redden, as if it were sunburned, and the other ill effects I've been warned of -- difficulty swallowing, perhaps nausea, and ever more fatigue.

Oh, in case you're wondering, I do have today off for the Fourth. Hereafter, it'll be Monday through Friday.

The medical practice has several offices, and the doctor I met with first, Dr. M, wasn't the usual doc for the Olympia site. Yesterday I met with the regularly-assigned doc, Dr. S. I'm sad to say that my perfect record of absolutely wonderful medical practitioners didn't hold for Dr. S. He's okay, nothing really wrong with him, but I just don't have the confidence in him that I've had with all the others. I've often been surprised at how carefully the other docs have read my medical records and all the tests, and seem to know all about me and my cancer when I meet with them for the first time. Not so with Dr. S, who thought I also had breast cancer. Then he opened up my records and read the part where the first PET scan showed "activity" in my upper right breast, but it turned out to be nothing. I did ask him about the PET scan I had last week, and was extremely pleased to learn that it shows no cancer anywhere. It still leaves the question of why I'm still showing cancer markers. I haven't seen Dr. K in a while, but I'll see him tomorrow and maybe I'll find out that the cancer markers are finally gone.

Speaking of seeing Dr. K tomorrow: Chemo starts up again. And here's the weird and sort of embarrassing admission. Dr. K told me some time ago that he was going to continue chemo when I started radiation. There are two pieces of information that I knew: 1) Chemo is two Fridays out of three; and 2) Radiation is five days a week.  Yet somehow I didn't put those two pieces of information together to come up with the knowledge that on two Fridays out of three I'll be getting BOTH forms of treatment. Duh. Tomorrow's schedule is chemo beginning at 9:30, including a visit with Dr. K, so I should finish up just it time to drive across town and have radiation.

Oh joy.

Next Steps

It's been almost 3 weeks since my last chemo, and I can't honestly say that I feel like I "bounced back" any. If anything, I'm more tired than before. The smallest deviation from my rigid schedule of a quiet life with lots of naps really throws my body off. The family get-together for my niece Rae's graduation was fabulous; and I took naps and went to bed early. Nevertheless, when I returned home I was very sick and threw up throughout Sunday night and then slept all of Monday.

Last week I met for the first time with the Radiation Oncologist. My perfect record of having wonderful doctors still stands -- although this doc was actually filling in for the regular doc. They want me to have the type of treatment known as IMRT, but because it's the latest and greatest, it's also the most expensive. That means they're going to have to fight with the insurance company for authorization. The second choice is 3-dimensional conformal radiation therapy (3D-CRT). There, don't you feel better knowing that? Regardless of which method is used, the tentative plan is that I'll start radiation treatment next week, five days a week for EIGHT weeks. I'm not sure when I'll re-start chemo.

Because both daughters were visiting, they went with me to the appointment. I was soooo glad they were here to be part of at least a piece of the process. 

Meanwhile, I had the second PET scan, which I slept through. I don't know the results from that yet.

I also had the "treatment simulation." This involved their making a body mold that will be be used to ensure that I'm in exactly the same position each time. They tattooed me in three places, one low on my sternum and the other two sort of in my armpits. When my arms are over my head, which they will be when I have the treatments, the three dots line up in a straight line. Just another way to line me up properly.

The radiation oncologist warned me that the fatigue from starting up chemo again plus the fatigue from radiation will be very very hard on my body. The fatigue quotient will be much greater than 1 + 1. He gave me a big packet of information, including dietary restrictions. A small sampling: No coffee, no carbonated beverages, nothing too hot or too cold, nothing spicy, nothing "rough," such as chips, no orange juice, grapefruit juice, or tomato juice. In other words, soft, bland foods.

But the Universe blessed me with wonderful daughters who are fantastic cooks, so Brena is taking time off work under FMLA and will come stay with me for four or five weeks. It's a HUGE, gigantic load off my mind, because I have complete confidence that she'll come up with tasty things to eat that meet all the restrictions. And of course, it'll be just plain fun to be able to spend that much time with her.

Though as she pointed out, we really won't see much of each other since I sleep most of the time!

And finally, I'm going to Harmony Hill's Cancer Retreat from Friday through Sunday. What a wonderful way to mark this entry into the next phase of my cancer treatment!

Hiatus

Last Friday was the last of the originally-planned 8 chemo sessions, and will have about a month off before starting radiation therapy. Unfortunately, those darn ol' cancer markers are still not at zero, so the doctor is going to add some more chemo when I start radiation. I don't know how much more chemo I'll have -- I suppose it'll depend on the markers.

The medication to improve my appetite is working, and I've gained a few pounds back. I still don't have much energy to actually cook anything, but my friends keep me in good food.

The CT scan I had a couple of weeks ago was "unremarkable," and I'll have another PET scan next week. The PET scan is the one in which they'll inject me with radioactive stuff, so it's really the very best diagnostic scan. They'll be looking to see if any areas "light up" with unusual activity that might indicate another cancer site.

One unusual side effect of chemo that I haven't mentioned is that it's made my fingernails VERY strong! Like most women, I love it when my fingernails grow out a bit, but inevitable\y one will break off and then I'll have to cut them all back so they're not all out of balance. Well, since I started chemo I've actually had to cut my fingernails because they're just too long! Love it!

The best thing coming up is that Whitney, Andrew, and Brena will be here Thursday. Well, not actually "here," but we'll all be together in Bellingham to attend my niece Rae's college graduation. We'll all hang out together until Sunday and then head back to my place, where Whitney and Brena will stay for a week. Yippee! It's been ages and ages since they've been able to spend that much time with me, and it'll be wonderful. And believe me, I'll put them to work doing some of the household and garden chores I haven't been able to do. And because they're wonderful women, they'll do so with smiles.

The other upcoming event is my cousin Larrie's 80th birthday on June 21. If you're reading this blog, you probably know about Larrie, the "family secret" who was institutionalized at Rainier School at the age of 6. Three years ago Shelly just happened to see an article in the Seattle paper about the school, with a picture of Larrie. I've been visiting him once a month ever since, and became his legal guardian a year ago. I knew that he was one of the first people admitted when the school opened in 1939, but it wasn't until a couple of weeks ago that I learned he was actually admitted on the very first day. He's the longest-term resident of the school, so they're having a big party for him. He fills me up with joy to be with him. His diagnosis is autism, and he doesn't talk. I'm constantly amazed at how good he is at letting me know what he wants, even though he can't "tell" me. I always wonder what's going on inside his head, and I handle that by simply assuming that he understands everything I say.

I still tire easily, I still sleep a lot, and I still have a positive attitude. While being a bit apprehensive about radiation, in general I'm counting on it being no worse than chemo.

And as always, I remain eternally grateful for my wonderful circle of friends and family, who sustain and strengthen me.