Showing posts with label survival. Show all posts
Showing posts with label survival. Show all posts

Friday, June 26, 2015

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.

Monday, January 28, 2013

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.



Monday, May 21, 2012

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.