Wednesday, May 3, 2017

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."

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Wednesday, August 27, 2014

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....

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.

Monday, October 11, 2010

Uh-Oh, It's October Again!

Reposted because they're still doing it!!!!

I love the month of October in general--the crisp air, the colorful leaves, the uplifting sense of change. But I hate walking into a supermarket and seeing PINK ribbons everywhere--not only the ribbons marketed for display on everything from automobiles to people, but their perky little "Find a Cure" images plastered on food packaging, for goodness' sake! Even the familiar tomato soup can has turned PINK--Andy Warhol must be rolling in his grave!

It's not that I have a problem with "finding a cure"; it's just more to the point to find out what causes breast cancer, and why this horrible disease is increasing in frequency in our population. So why is so much work focused on treating this condition, rather than preventing it?

For one thing, treatment is easier (notice that I don't say cure; metastatic breast cancer, at least is presently incurable). The disease is right there in front of everybody. Finding causal factors in genetics, the outdoor and indoor environments, food, etc., is a lot harder, costs a great deal of money, and has potential political implications.

Furthermore, breast cancer is a very profitable disase to treat, and patients survive a long time, even with Stage 4 / terminal disease like mine, compared with other cancers. During that time, breast cancer patients may receive one or multiple courses of very expensive chemotherapy and other treatments. My original chemo cost many thousands of dollars, and my ongoing treatments are several thousands for every month I stay alive. Pharmaceutical companies continue to research new treatments for breast cancer because this disease assures a good return on their investment. They are in business--can you blame them?

Still, it seems to me that we should be focusing culturally as well as economically on finding the causal factors for breast cancer, so that we can reduce or eliminate them. This disease is removing so many women from the workforce, their communities, and their families, at the very prime of life. Why aren't we doing more?

So to me those little pink ribbons aren't an inspiration; they're an irritant. Two years ago, I composed and recorded this parody to express my take on October; it's called "I Hate Pink!".


Tuesday, June 22, 2010

Pigs have wings !!!!! (Or: Take heart! if it can happen to me, ....)

I've just gotta shout it!

The impossible has happened: Ukulele Katie GOT A NEW JOB!!!!!

OK, that was back in March, but I'm waaay behind on my writing. But after a couple of months in the new slot, there are still times when I can hardly believe it happened--to ME!!! The uninsurable / unemployable / no-eyebrows / circling-the-drain / Stage IV cancer gnome!!!! Whew !!!!!!!



Long story short, I had brushed up my Monster profile way back in the fall, and was getting the occasional clueless nibble (head-hunters calling about contract work, when my profile states explicitly that I am looking for a full-time/permanent remote job with benefits. Yes, I know they're scarce. That's why I'm looking now....).

Lo and behold, a fellow who turned out to be a fireball of a head-hunter and a lovely person to boot, contacted me about a possible job match at a little, cutting-edge, biotech place a couple hundred miles from here.

A phone interview and an-inperson interview later, I got it! A lively, creative, fast-paced setting (yes that means lots of hard work and resourcefulness), a company that does genomic-based new drug discovery and development--NOT some plodding pharmaceutical behemouth, and above all, people who looked at my C.V., talked with me, and chose me to work with. What a wonderful thing to happen to anybody, but especially, little old Kancer Katie with her single-digit life expectancy and 6-digit annual health expenses.

I am still waiting to see if the new insurance company will "approve" my ongoing treatment...as it is garden-variety, they will have no legitimate reason not to, but like everything else about this escapade, I'll beleve it when I see it. The 60-day review period is almost up....

But let's stick with the positive. Somebody wanted me!!! Heck, if I could actually land a new job, maybe a boyfriend isn't a completely hopeless proposition!

So, in keeping with the tone of positive thinking, here is my favorite Sophie Tucker number, sans the full costume and dirty jokes, but with all the spirit:



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