"Cancer Awareness Month" - A Good Time to Get Fired Due to Cancer!

Ironic, eh?

I’ve been out of work on a short-term disability leave since mid-May; I’ve been unable to work due to side effects from chemotherapy (new regimes this year) and some pain from my spinal tumor. Unfortunately, my cancer is still progressing, and so far we’ve been unable to find an effective treatment regimen.

On the last Friday in September, out of the blue, I got a call from my company telling me I’ve been “released”—fired—because my FMLA (Family Medical Leave Act) had run out. In all the discussions I’d had with HR about the arrangements with FMLA, disability, etc., I was never warned that I could be fired while on short-term disability, so needless to say, I was astounded. No advance warning, no severance pay of any kind—just a few nice words, and I’m on my own.

I still have the private disability insurance ongoing, but I have to do all the administrative stuff on my own, now, which is no picnic, especially while I'm so debilitated.


Supposedly, if I am no better by the end of November, I should be transitioned to long-term coverage, but this is not guaranteed, and my previous dealings with this insurance company were an awful experience.... Anyway, I’ve applied for Social Security disability coverage, but even if/when that comes through, it’s a pittance compared with the 60%-of-salary that I get from the private insurance policy. If that continues, I’ll be able to keep my house, etc., but on SS alone, I’m facing some huge changes—including COBRA or ACA coverage for my health care expenses, which annually total more than my salary has ever been.

It's likely that what my company did was technically legal, but they could have managed to make this somewhat less devastating to me. Details and a discussion were posted at:

http://www.askamanager.org/2015/10/update-how-do-i-tell-my-coworkers-that-i-have-incurable-cancer.html#comments

I understand that business is business, but I feel that this was a heartless way to handle my situation. Meanwhile, I am doing my best to move on from this, and concentrate on trying to stabilize my cancer into something I can live with....

 

 

 

Where It's At

When I was a little girl, I never said, "When I grow up, I wanna be a Cancer Patient!" And more recently, I complacently expected to spend my advancing middle age dealing with nearly-grown offspring, elderly parents, college tuition, job worries, expanding opportunities for art and music, a modest dose of local political activism, and hunting through a tiny and ever-dwindling pool of potential male companions.

As it turns out, I do have all that. But I also have Stage 4/ metastatic/ incurable breast cancer. Even aside from all the unpleasantness of treating and monitoring the condition, cancer has changed my future in a fundamental way. Instead of a long, winding pathway, stretching out and fading into into the deep distance, my future is very short and obscured by the fog of uncertainty. My particular cancer responded well to the first chemotherapy and appears to be under control; but in the typical course of this disease, it will eventually become resistant to the drugs and begin to grow again. Then follows a downward spiral of treatment, response, and resurgence of cancer, until the patient gives up with treatment and dies.

The numbers aren't pretty. Something like 95%-98% of women whose breast cancer has spread through the body--i.e., is metastatic--will die of this disease. So what kind of future can I see? Will my disease get worse? (I refuse to ask "When?" as if it were inevitable. That's part of how I cope). Can I get my kids through college? Will I be able to keep my job? (and hence my medical insurance?)  Should I make arrangements about my house while I'm still doing OK? And for goodness' sake, what guy is going to want to get involved with someone in my condition (even if looks didn't count!)? Yes, it's all pretty damned foggy.

But of course, every problem has to be dealt with. My approach is a thorough technical knowledge of the disease and treatment options, combined with extreme denial of the statistics. After all, statistics are about groups, not individuals! Perhaps most of all, I rely on humor--sometimes morbid, sometimes ribald, but always from the heart. That's what motivated the little ditty below, which depicts some of the travails of living with this condition: "Terminal Cancer Blues."

I'm Going to the (North Carolina, shark-ridden) Beach!

First ever family week at the beach, 3 generations, who would miss it? Of course there is a potentially unsettling pattern of shark attacks going on this summer, and our rental is located right in the geographic center of it all. Nonetheless, I'm inclined to go with the statistics-versus-impressions on this issue....

Overall risk level (objective): FAR greater risk of death when driving there, than by being sharked at the beach.

Creepiness level (subjective):  Far creepier to be killed by a shark than in an auto crash (to most people; however, I would choose to assume my rightful place in Nature as occasional food for others. After a lifetime of carnivory, it’s only fair).

My sisters’ candid responses (as expressed at dinner last week):

Younger sister: putting no more than feet in water

Older sister: taking surfing lessons

Me (middle child, middle way?): will do as much as I can in the water, from the shore (normally a wave jumper, but currently in a weakened state). Will wear life jacket in any case, as I consider being devoured as preferable to drowning. Also, if eaten, will probably serve as poisoned bait, given all the toxic chemotherapy stuff I am drenched with. Serves them right!

Seriously, I am not worried. Also, our putative neighborhood has banned offshore shark fishing (thought to be an attractant) and also has established designated areas of beach where shore fishing is prohibited. And we are far from the nearest pier (also thought a risk factor).

We'll see!

Return to Club Chemo....

Club Chemo is an exclusive, and potentially last, resort.


You don't see the swells lining up to go there. And you don't come back (if you do at all) with a nice suntan and a stronger golf swing. You might end up with an improved dress size, but compensatingly, your personal vigor and beauty are likely to suffer significant indignities.


Most health spas promise to shape you up, to make you fitter and happier. Club Chemo will attempt to save your life, but it will take a lot out of you, whether or not it actually proves effective in treating your cancer. At a regular vacation getaway, you may watch yourself gradually evolve to higher levels of form and function; but at Club Chemo, you will likely witness a progressive deterioration in multiple body systems:

• Your hair follicles may fail--all over. While there may be some conveniences associated with this loss, it entails functional as well as aesthetic disadvantages. For instance, a smooth scalp may be chic and pleasantly cool during the warmer weather, but believe me, you do not want to spend a summer without nose hair. There are far more tiny insects to inhale than you ever, ever imagined; that internal filtering system is there for a reason.
• You will gradually slow down. What was once a brief, even pleasant activity can become an overwhelming ordeal. Flitting through Kroger's for some prescriptions and a few nourishing food items may wear you out like a 12-mile hike in the higher elevations of Shenandoah National Park. At some point, you may drop your pencil and proceed to spend several minutes attempting to perform the mental mathematics to determine whether bending down and picking it up is a worthwhile expenditure of energy for the day. Of course, even that intellectual operation won't be so easy....
• Your mind won't be spared. Thinking and remembering--they used to be so effortless. Now you will stop in the middle of a task, or a sentence, and find yourself in limbo, like that little whirling circle that my version of Windows uses to assure me that it's on the job, just be patient, a few more seconds....You will need a whole new level of patience to deal with your newfound idiocy, and so will your near and dear ones.
• Despite your inactivity, your body may be sore and aching for no apparent reason; you wake up first thing in the morning wondering what you possibly could have done to feel this way. In times past, it would take a weekend of raking wet leaves and drinking to excess to produce this level of malaise. Even the most sedentary occupation may eventually be too much, and you'll have to take medical leave, thus compounding your sense of futility.
• Some chemo regimens have additional characteristic side effects. One of my current agents (capecitabine) has given me a full-blown case of "palmar-plantar erythrodysethesia," otherwise known as hand-foot syndrome. This sounds like an affliction common to livestock in the old pre-veterinary days, and that probably isn't far off. Your hands and feet redden, swell, and become exquisitely tender, and then the skin peels off. You come to realize how many times a day you push buttons, turn handles, and perform other small and mundane operations that are a cinch for healthy hands; but now, each task requires some kind of work-around to minimize pain and further damage. As for your feet, I have one word: slippers. Whenever and wherever you have to be on your feet. Einstein made them a fashion statement, and so can you.

Despite all this, I don't intend to discourage you from Club Chemo. It may really help you.


Your sojourn on its premises may cure you completely; or it may buy you some priceless time. My first session, 8 years ago, enabled me, among other things, to put 2 offspring through college, progress in my career, sing and play music, create various inconsequential works of sculpture, walk through the glorious mountains, and engage in several love affairs, ranging from the otiose to the frankly disastrous. In other words, I gained some additional life--and for me, it was worth it.


So, I am back for another stint at Club Chemo, hoping to beat back my longtime companions, those various metastatic tumors, to a place where we can peacefully coexist for a while longer. If you're there, too, I wish you the best.

Now I'm scared....

After 7+ years in remission, my disease is progressing.


"Progress"--what a normally pleasant word for such a horrible event!


My tumor marker values have been bobbing around over the past 3 years, but have generally maintained an equilibrium around 3x above the upper limit of the normal range. A couple of PET scans in the past two years showed stable-to-decreasing activity. But this summer, my marker was increasing again, so my doc ordered a PET scan only a half-year after the previous one. And this scan shows increased activity in the main tumor site (right second rib) and new activity in my lumbar spine (L4 vertebra) and left  pelvis.


This means new tumors.


This is very bad news.


The usual course for metastatic breast cancer is a cycle of chemotherapy treatment / tumor response / remission / tumor progression / another chemotherapy treatment / tumor response / remission / tumor progression / yet another chemotherapy treatment / tumor response / remission...until the tumors no longer respond to chemotherapy, and the disease spreads through vital organs, eventually causing death. With 7 years of remission after the initial chemotherapy, I figured I was on velvet.


Now, I have to fight again. I have to start a new chemotherapy treatment that often brings debilitating side effects. I am already scarred by the previous treatment that was successful for so long: not only the obvious, permanent loss of my hair, but significant neuropathy in my hands and feet. I have lost some sensation and motor control; although I can cope, and am still working, hiking, and making music and art, it's harder than it used to be. And if I get over-tired or forget a dose of my medication (gabapentin), I get tingling/jangling sensations and frequent, painful, uncontrollable, Dr. Strangelove-type muscle contractions. Not fun.


The new chemotherapy has a side-effect called "hand-foot" syndrome, which can range in severity from slight redness/swelling to skin sloughing off. The patient care info sheet I received at my clinic helpfully suggests that one way I can try to avoid this is to avoid extended walking and use of hand tools. Now, some of my favorite activities are hiking, stone carving, and playing musical instruments. Do we see a problem here?


So...in order to try and buy some more time on this beautiful planet, I have to expose myself to a treatment that can prevent me from doing the things I love. That's the deal, and I accept. We'll see how this goes....

Happy Statistics (Or, There's Always a Bright Side)

As a scientist, I've always felt that information is of central importance. You find out something--you may love it, or hate it--but a fact is a fact. This is reality.

I originally had a very small, early-stage breast tumor back in 1996. The treatment was local--simple, limited surgery ("lumpectomy"--a nice combination of vernacular and technical), and 6 weeks of radiation. Then, in 2007, I developed breathing trouble, and we found that the cancer had spread, or metastasized, to my lung sac, chest wall, and several bones. Long story short, I had several months of pretty brutal chemotherapy, and have been receiving a comparatively benign drug regimen ever since.

As this story unfolded, I knew that my prospects for long-term survival were pretty terrible, but I wanted to find out as much as I could about my particular disease state. Early on, I stumbled across some interesting graphs, which I circulated to my family with a textual explanation that combines the numerical facts with a dose of possibly unjustifiable optimisim--I call this "informed denial." I've been updating this narrative as time passes....These two graphs are from the National Cancer Institute / Surveillance Epidemiology and End Results (SEER) web site and are based on a large amount of data reported for cancer patients during the years indicated in the titles.

(Title: Relative Survival Rates by Stage at Diagnosis For Breast Cancer, All Races, All Ages, Females; SEER 9 Registries for 1988-2003)

OK, with my diagnosis ("distant"=metastatic), I am the green diamonds on the rather sadly plummeting bottom line. The median survival after my diagnosis is 2 years—pretty grim. But that’s only 50% of my group who are doomed at 2 years—and as it’s been longer than that for me, I’m obviously not in that bunch. Some people have a bad disease at diagnosis—multiple tumor sites in lungs, liver, brain—and they don’t live long. I had only a very few sites…minimal visceral involvement, and no brain/spinal cord metastasis.

And, although the survivor line plunges down at first, it begins to level off after a while, suggesting the presence of a base group of people who live for a loooooonnnnnnnnggggggg time. Why, at 10 years after diagnosis, more than 10% of my group is actually still alive! Is there any reason why I shouldn’t be in that 10%? I think not!

Now, for something similarly interesting—conditional survival rates. This means, if you live X years, what is your chance of living another 5 years? Or more precisely, for a group that survives X years, what percent of them will live another 5 years? The next graph shows these patterns for the different groups.

(Title: Conditional 5-Year Relative Survival Rates by Stage at Diagnosis, For Breast Cancer, All Races, Females, All Ages; SEER 9 Registries for 1975-2003)


Isn’t it nice to see the curves pointing up? This simply means that the longer you live with this disease, the better the chance that you will continue to survive. Seems logical to me—and this pattern is especially noticeable for the “distant” (green diamond) group members, who have the lowest survival to begin with.

Since we’re among friends (please forget for a moment what I said about statistics in the opening blog), we can loosely interpret these group survival percentages as probabilities that an individual person in the group who survives the “conditional period” (X years) will survive another 5 years.

That is, having now lived more than 5 years after my diagnosis of metastasis, I have about a 50-50 chance of making it to 10 years. And if I make it 10 years, the chance is almost 75% that I’ll be around for another 5. Sounds good to me!

Again, this graph suggests a steady core of metastatic cancer, “distant” (green diamond) survivors, who are going to make it for a long, long time. Whatever the odds, I intend to be in that core.

5 Years' Survival--Or: I'm on Velvet!

I was diagnosed and treated for early-stage breast cancer in 1996, nearly 16 years ago.

I received the diagnosis of metastatic breast cancer in the first week of May, 2007--that's 5 years ago.

According to the currently available (and no doubt outdated) statistics, the probability of my surviving 5 years ranged from 15% (American Cancer Society data) to 24% (Surveillance, Epidemiology and End Results [SEER] Program data).

The median total survival with Stage 4 / metastatic breast cancer is from 2 to 3 years after diagnosis (various published sources). I am still in my "first" remission, 5 years later....

During the past 5 years of life, I managed to do the following:

• Watched as 2 daughters graduated from high school, and 1 of them graduated from college (2 more years to go for the 2nd daughter, and I plan to be there, cheering, on her graduation day!).
• Interviewed for, and obtained, 2 new jobs. My current job is WONDERFUL!!!
• Played music with a terrific, FUN, multitalented house band.
• Dated some interesting men.
• Created stone carvings, including my largest piece, Daphne (see below).
• Found a new level of attentional functioning with the blessed help of methylphenidate.
• Sung in a community choir, a women's choir, and a Threshold choir.
• Bought a new house, my very own.
• Laughed, cried, bitched, quetched, and generally lived life, with all its delights, drudgeries, worries, and satisfactions.

I am thankful--to the wonders of chemotherapy and Herceptin; the expertise of my health care providers; and the comradeship, support, and affection of my friends and family. Bless you all!!!

Notes on Daphne:

In the ancient Greek legend, Daphne was a wood nymph who attracted the notice of the god Apollo, who desired and pursued her. She tried to escape his embrace, and just before he caught her, she cried out to her father, a river god, who “rescued” her by changing her into a laurel tree.

Apollo made a crown of laurel leaves, and decreed that the laurel crown would forever after be a sign of great honor.

The pursuit, flight, and transformation of Daphne was depicted in a famous marble statue by the 17th-century Italian sculptor Bernini, and is also featured in Botticelli’s painting La Primavera. My limestone miniature represents a more stylized and personal interpretation of a most unwelcome metamorphosis.